Thursday, February 26, 2009

A Little Change of Plans...

Well, we met with Max's bone marrow transplant doctor today, Dr. Davies and we are not being admitted to the hospital tomorrow after all. Despite all of their very best efforts, Dr. Davies and her team have not been able to confirm Max's diagnosis and, in fact, have definitively decided that his aplastic anemia has not been caused by Fanconi Anemia. So, while this is really good news for Max, it is cause to delay the start of the bone marrow transplant process so that they can learn a bit more about exactly how to prepare for and carry out the transplant procedure.

The plan now is for Max to undergo another bone marrow biopsy on Monday afternoon. Looking at his bone marrow again will help Dr. Davies to decide how to approach preparing Max for the transplant...primarily how much and what type of chemotherapy to use.

While this is a bit frustrating because we are literally packed and ready to go, it is good news for the rest of Max's life, post-transplant. The Fanconi diagnosis carried with it extra worries (ie increased chance of leukemia later in life, infertility, etc) which will not be there once Max's transplant is complete. In addition, based on the testing that the doctors have done, they still believe that Alex and Ellee do not face a risk of developing aplastic anemia in the future.

So, we are happy to have another week or so still at home! We will gladly enjoy as much time as possible here at home...although we know that we still have to face the transplant process soon. They talked about the possibility of being admitted a week from Monday, March 9th, depending on the bone marrow analysis and how quickly they can get plans in place, etc.

We'll keep you all posted as things move forward. For now, we'll be here at home if you'd like to contact us (or down at Children's) :) !

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

Wednesday, February 25, 2009

Best Friends & LOTS of Pillows

Yesterday Max asked me to be sure to put something on the blog about his best buddy, Tusker. For those of you that don't know, Tusker has been Max's special blanket/stuffed animal since he was just 6 months old. He goes with him everywhere and has been right by his side through every transfusion, IV and other procedure throughout his journey. He's a very special little elephant and has received lots of attention at Children's along with Max.

We made a HUGE mistake the other night too, related to Tusker. After an 8 hour day down at the Day Hospital at Children's on Monday, Max and I left for home. We had all our stuff...or so we thought! Twenty-five minutes later, as we pulled into the garage at 8:00 pm, Max said to me, "Mom, do you have Tusker?" Oh my gosh! We left him at the hospital! So, poor daddy got in the car and went flying back down there and up to the Day Hospital to rescue little Tusker...and thankfully he did! Tusker was in the huge pile of bed sheets heading for the hospital laundry! We may not have ever found him again! Thank goodness for brave, tireless daddy! We threw him right in the washing machine when daddy got home and then tucked him into bed with Max.

Yesterday morning, Max and Alex decided to take just about every pillow in the house and build a cool fort on top of Matt and I's bed. They had so much fun playing in it. They have been a tremendous blessing for each other throughout this journey so far and I can see them just growing closer and closer everyday as we go through this. One of the many blessings that is actually coming out of this experience.

Yesterday afternoon Max had some outpatient surgery to get his central line put in. They also removed his PICC line at the same time. Luckily, we had our good friend, Ms. Signa from church as our nurse in the recovery room. What a treat! She treated Max like gold and made him feel very special. Max did well, overall, although it was tough on the little guy. He's still sore and a bit tired out this morning but, should be feeling better later today.

We are still planning to check into the hospital on Friday for our long stay and to begin the transplant process. Matt and I meet with Dr. Davies tomorrow to go through the entire plan and sign the consents. Won't be much fun but, we need to know exactly what we are getting into before it begins.

We are all a bit nervous and anxious right now but, we are taking things a day at a time and saying lots of prayers. We know how strong and determined our Max is and we are just certain that he is going to get through this and have the rest of his life ahead of him. Thanks for all the continued support...it means so much to all of us!

Love,

Kristi (and Matt, Max, Alex and Ellee)

Special Clevelander Blood Drive for Max

Last Saturday, my aunts, uncles and cousins from my mom's side of the family did something very special for our little Max. They drove all the way down from Cleveland (about 20 of them) to donate blood and platelets at the Hoxworth center in Mason! We hear that a few of them had a bit of trouble with light-headedness and fainting afterward but, other than that, they all did well!


Max wrote each of them a special thank you note and told them that with their blood and Ellee's bone marrow, he had hope that he would get all better! We were all extremely touched by this kind and very thoughtful gesture in Max's honor. Not only did these family members replenish much of what Max has needed over the last few weeks but, they helped to save countless other people as well. What an amazing thing!

Thanks, Clevelanders! We love you all!

Thursday, February 19, 2009

Messages for Max From Chi-Town

Jack (left), Chris (right) and Lynne (camera operator and sister of Uncle Mark) Peckham wanted to send a special message to Max from Chicago! They got creative with construction paper and created a 'cubs baseball-style' sign for Max to say hello and let him know they are thinking about him everyday.  And, they had a little fun with Max's name too! They miss him and look forward to another turkey bowl game soon! For those that don't know, it's become a family tradition with the boys to play flag football on Turpin's football field early afternoon of Thanksgiving, hence the name the turkey bowl. 

If you have pictures, drawings, videos or letters to send to Max while he is in treatment, email Aunt Sarah (meyerou@hotmail.com) and I will post them to the blog or email them directly to Kristi if you prefer. 

Transplant Fast Approaching!

We found out today that it is looking like we will be admitted to the hospital to begin the preparations for the transplant (ie Max's chemotherapy) next Friday, February 27th. Ironically, this was the date that we were supposed to be leaving for a trip to Florida to visit Ellee's namesake, my grandma, Elizabeth. Little change of plans.

The harvest of Ellee's bone marrow will take place a week from our admission so, Friday, March 6th in the early morning (7:45 am). Max will be given her marrow later that afternoon so, that will be a truly HUGE day for all of us.

We are making preparations for our long stay in the hospital and will be providing information on visitation through the blog, if you are interested. We do know that visitation is restricted to adults that we approve of only (ie no kids are allowed unfortunately) and that you have to be very healthy to visit (ie not even a runny nose). I believe that they will monitor your hand washing when you check in and will even take your temperature and check you for cold or flu like symptoms. The bone marrow transplant unit is what they call "locked down" from the germ perspective. With all this said, I am certain that we will love having visitors so, if you are up to it and interested, keep checking back on the blog for further information.

Max will also be getting his central line (some people call it a port) in his chest on Tuesday. This requires a relatively minor surgery so, he will have to be put under in order for it to be accomplished. He will also receive transfusions of blood and platelets ahead of time on Monday and Tuesday morning to be sure his levels are acceptable for the surgery.

We are having a much quieter, nice week this week. We have not been to the hospital since Tuesday and, at this point, do not have to go back until Monday so, Max feels like he is on vacation right now! Pretty funny how much things can change in such a short amount of time!

We have a contingent of about 30 family members coming down this Saturday from Cleveland to donate blood in Max's honor at Hoxworth. We are extremely touched by this event and will have Mama and Papi Sherwin take some pictures, etc for us to post on the blog afterwards.

Thanks, again for all that everyone has done to show us how much you care and are behind us in this journey. It has really helped.

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

One EXCITING evening!

We had quite an evening last night as Max and Alex had a very special visitor! Our neighbor and local dirt bike racing champion, Matt Pohlkamp and his wife, Jessica stopped by for a visit and to bring some very special gifts to Max to help him through his tough journey ahead. They have heard what a fan of biking and skateboarding that Max is and how brave he has been so far so they loaded him up with gear to use in his future racing career, as well as posters for him to decorate his room with at the hospital and even a magazine with an article and photos featuring Matt! They even brought him some "Celly Smellys" wipes from Jessica's business to help Max keep his DS, iPod and other electronics spic and span. How exciting!

Here are a few pictures from the evening. Both Max and Alex were very much in awe of Matt and spent lots of time today checking out his website (link above and in Max's favorites) and watching his YouTube videos. Thanks so much Matt and Jessica!













NEW DATE! Blood Drive for Max is March 9

The blood drive for Max has been changed to Monday, March 9. It will be at Wilson from 1 - 7 pm. Please email (Aunt) Monica McGrew (mmmcgrew@yahoo.com) to sign up for a time. Hoxworth Anderson will also be taking both blood and platelet donations for Max's drive. Hope you all can make it. Thanks for your support.

Tuesday, February 17, 2009

Another Dose of Great News!

We got some more great news today...Alex is also free of Fanconi Anemia! So, now we have TWO healthy and one waiting for healing to come from his baby sister! Although the road ahead is still scary and long, we can see the light waiting at the end of it!!!

We spent another long few days at Children's having all kinds of tests done on Max - kidney function, heart, CT scans to check for any signs of infection and all kinds of blood work. Ellee had additional blood work done today and last Thursday along with a full physical today to be sure that she is ready for all of this too. So far everything looks great with both of them and we are gearing up to begin the process for the transplant. As of today, they are tentatively thinking we may be admitted by the end of next week. They are still waiting on some final diagnosis testing for Max to determine exactly his course of treatment, etc. but, then we should be ready to go.

We thank you all so much for your continued thoughts and prayers, food, gifts, cards, etc....for donating blood in Max's honor, for donating toys to Child Life, etc. Everything has been so touching and has made this journey a little easier along the way. You have also brought many smiles to Max's face, as well as Alex and Ellee's.

We are so very blessed...despite the difficulty of our journey currently, we feel so lucky to have so much. Three beautiful children, fabulous families, an amazing supportive community, the best doctors and nurses you can find...it just goes on and on. Please continue your prayers for all of us, they really are working.

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

Monday, February 16, 2009

Have Questions for Matt & Kristi?

We hope this blog does a few things...keeps you updated on Max and the Meyer family, lets you get to know Max a little more and serves as a general communication forum. 

So, if you have any questions, comments or well wishes, make a comment to this post. I will answer the questions as best as we can and post the answers so we can share with others. And, I'll make sure your comments and well wishes get to the family. 

A quick tutorial for those that have never followed a blog before. 
  1. MAKING COMMENTS - Just click on the comment word and type what you'd like to say. I changed the blog settings, so even if you are not signed in as a follower, you can comment. Just make sure to sign your name so we know who you are!
  2. BECOME A FOLLOWER: - Please sign in as a follower so Max knows how popular he is! Here's how: Under the followers section, click Follow This Blog link at the top. You will be asked to sign in with a google account. If you don't have a google account, click 'Sign up for a free Google Account' on the left. Fill out the form and click continue. You may have to sign up for a Google email address to do so.

Saturday, February 14, 2009

Alex: Great Brother. Great Buddy!

God gave Alex the important job of being Max's best buddy through all of this. And he is doing a GREAT job at it. He's always ready to challenge Max to a game on the Wii or play a board game with him (Alex is great at Guess Who). He also loves to snuggle up with Max and watch movies or a Xavier game. And best of all, he is great at making Max laugh and have fun. Which is what he needs most right now. 

He'll do whatever he can for his brother. One night, while he was saying his prayers before bedtime he had a sad look on his face and said to his mom, "Mommy, they should'a taked me." Translation: He wanted them to take his bone marrow so he could give it to Max. What a giving and sweet little guy!  High fives Alex! You're a great brother and best buddy!

Friday, February 13, 2009

Who Likes Shopping?

While in the hospital, Max has been lucky enough to play with the toys offered by Children's Child Life Specialists. And, he's going to be using them a lot more when his treatment starts - he'll be there for about 6 weeks. Max loves the video game carts! The only thing is, so many hours have been logged on these games that they are in pretty rough shape. And their wish list extends to all ages of kids. 

So, if you like shopping and are feeling generous, Children's would LOVE donations. A wish list is attached here or to the title of this blog.  A few ground rules...
  • Due to infection control and security reasons, all items have to be brand spankin' new
  • They won't be donated directly to Max, but if you specify they are for Hem/Onc Child Life then there is a good chance Max will get to play with them! 
  • There are some big ticket items on here, so if you'd like to donate money towards a big item, email me (meyerou@hotmail.com) and I will coordinate the purchase.
  • Gift cards are welcomed for those families who have a specific need for their child.
  • Know that you are truly appreciated by all the scared little kids in treatment!
Have a gift to donate? AWESOME! Here's how to get it to the kids:
1. Take it to Children's to the B Welcome Desk and specify that it's for Hem/Onc Child Life
OR
2. Email Aunt Sarah (meyerou@hotmail.com) to arrange for me to pick it up from you or you to drop it off at my place in Mt. Lookout. Then I'll make sure it gets to Children's. 
***a shopping tip: Big Lots has TONS of toys at great prices so check that out first. 

Maxer Is Becoming A Pro At This!

But it's still no fun :( ... Here's a pic from the hospital this week, when Max was getting one of his regular transfusion. Can you see the blood coming from that machine on the left? I believe this transfusion is helping raise his H&H levels (Hemoglobin and some other H word) by giving him red blood cells. He usually gets platelets too, but Ryan tells me if it's a straight platelet transfusion, it's usually yellow in color. We're all going to be experts by the end of this...
It's hard to see in this one, but he's rockin' his tony hawk t-shirt...still the same old Max!

How Does a Bone Marrow Transplant Work?, you ask...

Need a little education? Click on this title for a PDF called, The Nuts and Bolts of Bone Marrow Transplants. It tells you all you need to know AND in words you can understand. Just the facts, Jack. It's a scary procedure and will be a long road for Maxer and all of us who love him, but we really believe God will be watching over him and keeping him safe. 

Thursday, February 12, 2009

Playin' Madden 08 at Aunt Sarah & Ryan's House

Kristi, Max, Alex and Ellee came over to Aunt Sarah's today! They were bummed Ryan wasn't home (Max wanted to challenge him to a game of Mario Kart) but maybe they can come back soon and play when he's not at work!

We had a yummy Zip's burger and then hit the couch to play some Madden 08 on the PS3 (read: a video game!) Alex was Chad Johnson and Max was The Browns and then The Patriots. Max scored a lot of touchdowns...here's an action shot. Max seems to be feeling good! He's a resilient little dude!

Ellee had a great time too. Here she is showing off her construction hat from Aunt Sarah's toy box. She needed that construction hat this morning when she got her arm pricked for more blood tests. She goes back again Tuesday -- these are just steps to prep for her big bone marrow transplant debut for Maxer. 
After Madden 08, we took Duke on a short walk (he actually took me on a walk) and then they headed home for the day. Thanks for coming over guys! It was a blast!

Yee Haw!!!

It's officially confirmed! Ellee's bone marrow is a match for Max AND she does not have the Fanconi gene!! Woo Hoo! A very exciting and amazing thing for us! She is such a blessing in so many ways!! This means she is cleared to donate her bone marrow to Maxer. As the doctor said to Max, Ellee's girly blood cells will hopefully be swimming around in him soon!

We should hear about Alex next week. 1 healthy, 1 waiting and 1 needing some healing. Keep up the prayers!

Little savior sister Ellee:

Wednesday, February 11, 2009

A Bit of Great News

We've had a very busy time lately but, wanted to be sure to share our bit of great news that we received the last few days. We don't have official confirmation yet but, Ellee appears to be free of FA so, things are moving ahead for the bone marrow transplant from Ellee to Max later this month or early in March! As we have said before, this is definitely a best case scenario for Max, as tough as the next few months will be.

Max had a PICC line put in yesterday morning (a permanent IV line under his arm) which will help to minimize the number of sticks that he has to go through over the next few weeks. We met with our new doctor, Stella Davies, and her team over the last couple of days and they are wonderful! What a talented bunch! We feel so blessed to have them on our side and healing our Maxer. We learned a bit more of the details about what will go on during the bone marrow transplant. To summarize, Max will be in the hospital for approximately 6 weeks. He will be unable to leave his hospital room as it is specially air purified and he will be so extremely susceptible to infection. One of the initial things they will do is remove his PICC line and put a central line into his main artery in his chest. He will be under anesthesia for this procedure so, at the same time, they will take another biopsy of his bone marrow to see where things stand.
During the last phase of preparation for the transplant, he will undergo 8 to 10 days of chemotherapy. He will lose his hair and will probably be very "pukey" during this phase. The transplant will take place on what is known as day zero. On that day, Ellee will undergo a relatively minor surgery to harvest her bone marrow. She will be put under general anethesia and it will take about 2 hours for her to get entirely through the harvest procedure. She should feel pretty good later that day and may be able to go home that night. That same day, Max will receive Ellee’s bone marrow through his IV line. Quite amazing! The next three weeks time will be the most critical for Max as his immune system will essentially be non-existent and trying to rebuild with Ellee’s marrow. The doctor’s will be closely monitoring him, obviously, during this time and will be hoping to see Ellee’s white cells being created in Max’s body!

The final phase of the transplant is the growth and maturing of the bone marrow in Max’s body. It will have to completely rebuild his immune system and will take lots of time. They are telling us that it is typically at least a year before kids can return to public places (ie school, stores, restaurants, etc). It can be two years before their immune systems return to where they once were. He will need to be completely re-immunized, for example, after the transplant and once his immune system can handle it.

So, we have quite a road ahead of us. But, we know that it is a hopeful one and that as hard as the next few months/years may be at times, it will all pay off for all of us as Max will be healed and will go on to live a fruitful, productive and wonderful life. He is maturing immensely through this process already and will be ready for anything that life throws at him after this (as if he wasn’t already). We have been telling him about what is going to happen little by little and he has handled it all very well so far. We will be right by his side through all of this.

We still do not know about Alex and the FA. They rushed Ellee’s tests to find out first for Max’s sake and for the bone marrow transplant urgency. We hope to know about Alex next week and are doing our best to think positively about the outcome of his testing.
We have observed three ways in which you can help already, if you are interested. We plan to start doing all of these things once we get through this. First, donate blood and/or platelets. It has saved Max and sustained his body through this difficult time. Second, call the Ronald McDonald house to see how you can help them. We cannot imagine if we were not in our home town, on top of everything else! Finally, Children’s Hospital has a service called Child Life for the kids while they are at the hospital. People from Child Life visit the kids while they are there and offer them toys, video games, movies, books, etc. to help them be entertained and feel a bit more comfortable while they are there. It has been an enormous help with Max and all of our kids when we have been there for different tests, procedures, etc. We have observed that they are definitely in need of some upgraded toys, movies, video games, etc. You can donate either money or new toys to them and I have a wish list of items for the Hematology/Oncology unit if you are interested.

The next few weeks are going to be very busy with preparations for the transplant for both Max and Ellee. Max will have some kidney and heart testing done on Friday and some CT scans on Monday. Ellee will have blood drawn for various tests in preparation for things tomorrow and Tuesday, along with a physical by the transplant team on Tuesday. In addition, Max will have blood transfusions as needed along the way. We will provide more updates as we can as things go on.

Thank you all, once again, for all of your thoughts, prayers, gifts, cards, meals, cookies, etc…they have all brought smiles to Max’s face! We are going to get through this and knowing that we have such an amazing community of support around us is helping us every day.

Tuesday, February 10, 2009

Keepin' Up With The Positive Thoughts and Prayers

We have good hope that Ellee is free from FA and will be able to donate bone marrow to Max. The test is not confirmed yet, but things are looking good. Keep up the positive thoughts and prayers!

Max is getting a PIC line today so he will no longer have to get pricked in the arm or hand to get his blood tested. Let's pray he forgets it's even there. 

Wednesday, February 4, 2009

Blood Drive for Max!

Save the Date: March 23rd
Wilson Elementary
10am - 4pm
AND
Anderson Hoxworth (7715 Five Mile Road in the Five Mile Center near Fifth Third)
5pm - 7:30pm

Hoxworth Calling for Type O Blood

According to WCPO, Hoxworth issued a statement saying they are running critically low on Type O blood. If you or someone you know is type O and at least 110 pounds, please consider donating!

Call 513-451-0910 or visit www.hoxworth.org to donate. Mention Max's name to donate in his honor.  Max is type O. 

Prayer Circle - 2/6 at 7:30 PM at the Meyer's

Mary Beth Rutherford has been so generous to organize a prayer circle for Max, Alex, Ellee, Kristi and Matt. Adults and children welcome. If you want to participate, here's how:
  • Arrive on the Meyer's driveway by 7:25 pm and bring a candle in a jar
  • Form a circle with the others as we'll begin at 7:30 pm
  • Once we begin, please place your candles at your feet and hold the persons hands to the left and right of you
  • Someone will begin with a prayer and squeeze the hand of the person to their left to signify that their prayer is complete and they should begin.
  • If you wish or are unable to say something, please squeeze the hand of the person next to you to signify you are passing the prayer. 

Max is a funny little dude!

Ellee, Max's baby sister is a perfect match for the bone marrow transplant! We knew the first girl of 7 grandchildren on the Meyer side was a special one! (Matt and Kristi, may I thank you again for taking the pressure off me [Aunt Sarah] to have the first girl!) We strongly believe that God sent her here to heal Max and that Ellee and Alex are free from FA. We find out in about 2 weeks. Keep up the prayers friends!

I heard from Gaga that Max told his baby sister Ellee to 'stay healthy because you are my bow and arrow'. Ha ha! Kids say the greatest things. He meant bone marrow donor, but I can surely see how he could mistake the words. 

The Recap - Jan 14 - February 4

The attached PDF captures the awesome emails that Kristi wrote to recap Maxer's journey thus far. In short, Max had unexplainable bruising, pale skin and seemed to be lethargic. At Aunt Sarah's 30th birthday party, Max was having fun with his cousins and got a bloody nose...that lasted an hour. They went to the doc the next day and found his platelets were extremely low, so they were referred to a hemotologist at Children's. After a few weeks of testing, questions, waiting, etc. Max was diagnosed with Acute Aplastic Anemia caused by Fanconi Anemia. Learn about Fanconi Anemia