Tuesday, March 31, 2009

Prayer Vigil

WOW, it is incredibly amazing to see the tremendous support Max, Ellee and the Meyer family have. I am in tears right now looking at all the names on the spreadsheet from around the US who are taking time out of their day to pray for Max -- many of whom have never even met the amazing little guy! Thank you all for your overwhelming support and love. Your prayers are being heard, I can feel it. 
Love, 
Aunts Sarah and Molly
***************

A BIG thank you to all of you who are praying for Max. We truly believe in the power of prayer. We're organizing an around the clock prayer vigil for Max for the days after the transplant. If you would like to dedicate 20 minutes to pray for Max, please sign up via the google document link below. You can sign up for one 20 minute time slot, or several. Won't it be great to know that Max is being lifted up in prayer throughout the day? Thanks again for all your support.

Click here to access to the google document. Add your name where you'd like and go to the FILE menu and choose "save and close" The window will go away. Your name should save but you can click back in just to be sure. If "save and close is not an option" hit ctrl+s or apple+s and you should be safe. Also, if someone else is in the doc at the same time, you can still add your name as long as your don't write in the cell that they are working in, denoted by the gray box. Email meyer.eventplanner@gmail.com if you have trouble and I'll help you out. 

Love,
Aunt Molly and Sarah

Sunday, March 29, 2009

A Rough Day But Chemo's Over!!


Max had a rough afternoon today. His tummy was not cooperating with him at all. As we expected, the last chemotherapy today (called Melphalan) caused him to have major nausea and vomitting. But, the nurses worked hard to help him out with some nausea medication and he is in good shape tonight, resting comfortably now and watching his favorite show, iCarly.


The chemo preparation regiment is now over which is awesome! The effects of the three chemo drugs combined can be seen in the three major cell lines of Max's blood. His red and white cells as well as his platelets are all at very low to critically low levels right now as a result which indicates that his body should be ready to accept Ellee's marrow on Wednesday. Of course, that's what we are hoping and praying for! At this point he has not yet lost his hair but, that is still expected to happen over time (probably little by little over the next couple weeks). Max is ok with this and has been joking about it from time to time.


Ellee is feeling a little icky from her GCSF shots. She's had three of the five now and will have two more over the next two days. They can make kids feel achy since they are intended to spur the bone marrow to overproduce in preparation for the harvest on Wednesday. She'll come here at 7:30 am on Wednesday for surgery at 9:00 am that morning. Our families are all gearing up to help out that day and the next as they will obviously be momentous for all of us! Alex has big plans for some fun outings with Papi (Grandpa John, my dad) and Aunt Molly and her boys so that he won't have to feel like he's missing out on any fun down here at the hospital (ha, ha).


We are excited to be at this phase in the process and nervous, yet hopeful, about the next few weeks. Max will likely have his share of ups and downs as the marrow engrafts in his body and begins to grow but he has weathered everything like a champ so far and we hope and pray that this will continue.


We'll keep you posted over the next few days as things progress. Please keep those thoughts and prayers coming! They are making a huge difference for all of us.


Love,

Kristi (and Matt, Max, Alex and Ellee)

Friday, March 27, 2009

Hanging in There!

Just a quick update to let everyone know that Max is really doing quite well this week. Tuesday was his lowest day of the week and since then he has really been doing better. His energy level is great, he is eating and drinking some and he is overall feeling pretty good. He has had his share of issues with his tummy again from the chemo but, he is hanging in there with them and the doctors and nurses are helping us work on them and they seem to be improving each day. He has not gotten sick at all today which is great!

Only two more days of chemo to go! We can't believe it...the time is just ticking away! We have one more day of Fludarabine tomorrow, which is the chemo he's been on since Tuesday and then the last dose on Sunday which is called Melphalan. It's supposed to be pretty nasty stuff (as if it all wasn't) and is expected to make him feel pukey so, given that he has felt that way with the other stuff, it will probably be a bit rough for a few days. But, after that, Max will be done with the chemo and ready to receive Ellee's marrow on Wednesday.

It's hard to believe that we are at this point already. It's really happened somewhat quickly, it seems. We are ticking down the days with this calendar that I made (see the picture in the beginning of this post) and, of course, anxious to get home and be together as a family again!

Ellee had her first shot of a drug called GCSF today which is intended to spur her bone marrow production to help both she and Max out after the "harvest" on Wednesday. She did really well with it...she cried for a minute but, it was over with quickly and she was back to watching her favorite "Baby Einstein" and eating french fries and Fruit Loops!

The whole process has been amazing so far and we are thrilled that things are progressing as well as they are and that we are right on track at this point. We are praying that this continues and thank you all for all of your thoughts and prayers, which we know have helped throughout the journey so far.

Max is shooting some hoops right now and is looking forward to watching the Spongebob movie on Nickelodeon tonight. Matt and I are actually planning to go downstairs for dinner together while Gaga hangs out with Max for a bit...a rare treat at the moment (not the cafeteria food...the time to actually talk!)

We're all "hanging in there" right now. Taking it day by day. We'll keep you all posted as things progress.

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

Tuesday, March 24, 2009

A Big Day

It's all catching up with little Maxer today. For the first time in a long time (maybe his whole life just about) he has spent the afternoon in bed and is actually sleeping right now! He had his first dose of the last round of chemotherapy this morning and it has really pushed his body over the edge. He's exhausted. This is very much expected at this point and it will probably be the case for the next few weeks, if not the next several weeks. We are definitely in the "heat" of this journey and it is getting intense.

Max's spirits are good and his body is doing what it is supposed to be doing so, we just have to hang on and get through this. We are in what the doctor's call day -8, with the transplant day (April 1st) being day 0. The next 3 weeks will be the most intense and probably most difficult part of this journey for all of us. So, please keep your prayers coming for Max and the rest of us. We appreciate them!
I am keeping busy during this quiet time by writing thank you notes to express our gratitude for all the things that you all have done for us. It's been quite amazing and overwhelming and we want you all to know how much it has meant to all of us!

Alex and Ellee are hanging in there at home. They have been enjoying the nice weather in Cincinnati whenever possible.

There was an editorial article in the Cincinnati Enquirer yesterday written by Krista Ramsey about a little girl with aplastic anemia who had a bone marrow transplant here at Children's Hospital when she was 7 years old, just like Max. She is now 20 and is fully recovered and doing very well...studying in France! We were extremely inspired by this and have our sights set on the exact same thing for our little Max in the future. He probably won't end up in France (at least it doesn't appear that way at this point) but, I'm sure we'll find him 13 years from now touring with the Extreme Sports gang or, as he would like it, in the NBA! :)

Take care, love each other and we'll send more news soon.

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

Sunday, March 22, 2009

A Wonderful Visit!

Yesterday afternoon, Max's prayers were answered! He got to visit with Alex and Ellee for about an hour up here! He was cleared on Friday of the isolation that they had him in for a cold he had several weeks ago and was allowed to venture out to the playroom for "private playtime" and to the lobby to visit with his brother and sister. "Wow...that was awesome", were his words as he returned from both visits yesterday!

The next few weeks are HUGE in Max's life, as well as our entire families. We are moving into the bone marrow transplant unit tomorrow morning and final prep of Max's body will start on Tuesday. He will undergo six more days of chemotherapy and we anticipate that he will not be feeling good during that, given what happened with the first round. Then, Ellee will come in for her "harvest" surgery on the morning of April 1st. They will take her marrow to Hoxworth to be processed and bring it up to Max later that day for the infusion through his central line (ie the transplant)! That, obviously, will be an extremely momentous day for all of us.

Ellee also begins final preparations this week. She will receive shots from Friday through Tuesday before the transplant of a drug called GCSF to enable her marrow to produce as many cells as possible since she is so much smaller than Max. She will also have a full physical and some additional blood work done the day before the surgery.

It's all somewhat hard to believe, to be honest. I have definitely experienced a roller coaster of emotions like never before in my life over the last few days and I anticipate that will continue throughout the next several weeks. But, we are hopeful and confident that Max is going to do well. He is so strong and in such great spirits right now that I don't think he could be heading into all of this in better condition, given the state of his body at the moment.

Max got both a full blood tranfusion and platelets this afternoon so, thanks again to all those who donated recently! It's being put to good use for sure.

A good friend of mine from Michigan asked us some great questions about things down here at the hospital that we thought we would share with everyone. We figured some of you might have some of the same questions (see the bottom of this blog entry)

Hope you enjoy the video of the kids getting to see each other yesterday for the first time in 13 days! The video is short and not so great because (of course) my camera was running out of battery! But, it was awesome to be together, even for an hour in a hospital hallway! It felt wonderful and gave us the spirit booster that we all need going into the next phase of this journey.

Please keep the prayers going for Max, Ellee and really for all of us. We need them and so appreciate them!

More soon.

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


Do you and Matt both stay at the hospital? No, they just ask that one of us stay at a time each night. The bed is like a little pull out couch thing that is just a twin size.

Where do you sleep? Thankfully right in his room with him. It's fairly comfortable. Like a vinyl couch pull out but, I brought our own sheets and blankets and pillows from home which helps a lot.

Is your Mom staying at your house with Alex and Ellee? Well, one of us is home with them each night (I have mostly stayed here but have been home for 3 nights so far...we are trying to switch off every couple days at least). We have a combo of my mom, Matt's sisters and Matt's mom helping with Alex and Ellee during the day.

Are you and Matt both on leave at work? I am but Matt is not. He has been working since this all started and just "flexing" as necessary. He's been in late several days or left early or come up here for appointments during the day before we were admitted, things like that. He is planning to take two weeks off coming up here to help during the last round of chemo and the critical weeks right after the transplant.

Is there a window in Max's room? Yes there is but, it just looks out at the other side of the building, unfortunately with bricks, etc. But, at least we have some sunlight in here! I wish we had a better view and there are rooms with a better view. We'll be having to move fairly soon over into the BMT unit because we are in the overflow area now where the Oncology patients are so, hopefully we'll get a better view then! Although, I wonder if that might make it worse for Max to be stuck in here if he could see how nice it is outside and see people enjoying it, etc.

video

Thursday, March 19, 2009

Another GREAT way to help!

Over the last 11 days here at the hospital, I have realized that there are LOTS of opportunities for people to help down here! I discovered that there are kids right here on this unit that are enduring some of the same things as Max but, they are ALONE! I cannot imagine what that is like for them...it is tough enough for Max.

So, I did some "digging" around and found out that you can volunteer down here to come and spend time playing with kids like these. Wow...what a way to brighten a child's day!

Some time ago, I posted a list of things that you can do to help and you all responded incredibly well! I have learned a lot over the past several weeks and, while the list has changed slightly, much of it remains the same. I told you earlier that the Child Life group down here could use some new toys and you all responded to that request overwhelmingly! While I'm sure they could still use more items, I am going to switch that "way to help" over to asking folks here in Cincinnati to consider volunteering down here instead. Here's my list now with some extra info for you:

1. Give blood. Contact Hoxworth here in Cincy (http://www.hoxworth.org/) or the blood bank in your city to find out how. Max is utilizing platelets 2 to 3 times a week at this point and will be for the next several weeks, along with blood about once every two weeks. Most of the kids on this unit are doing that same thing.

2. Contact the Ronald McDonald House to see how you can help (http://www.hoxworth.org/). We cannot imagine going through this away from home! These people need your extra help!

3. Consider volunteering your time down here at Children's in Cincy or at some other hospital in your city (http://www.cincinnatichildrens.org/give/volunteer/default.htm). You could really brighten a child's day!

We have felt so blessed by the love and care that you all have showered upon us! We can only hope to return a portion of it to other families that need it.

Max continues to do amazingly well this week. The doctors told us on rounds this morning that he has more energy than the rest of the BMT floor combined! Great news!


Max misses his brother and sister so much! He broke my heart in bed last night as we were trying to fall asleep and he was looking at the picture of the three of them on my computer when he said, "I just wish, wish, wish that I could see them in real life...not in a picture." Then he put his hands together and looked up and said, "God, please, please, please." This is probably the toughest part right now...being apart. Don't ever take your family time for granted! Love means everything!

More soon.

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

Tuesday, March 17, 2009

Happy St. Patrick's Day!

video


Hope you are all enjoying your day of green cheer and beer! Max got to make some special St. Patrick's Day cookies from the Child Life group down here at Children's. He enjoyed decorating them, as you can see in the video and, of course, eating them!

Max is doing well this week. His tummy issues have improved and he is feeling good overall. He is back to eating and drinking some and running around the room here! His blood levels are definitely dipping big time so the chemo is doing its job so far.

We bring Ellee in on Thursday for some preparative blood work so, things are starting to gear up for the big day! Ellee and Alex are adjusting to Max and one of us being gone all the time although, they don't like it...just like us! It's the toughest thing to be apart like this. We'll never take it for granted again!

Enjoy your St. Patty's day and we'll write more soon!

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

Friday, March 13, 2009

One Round Down...One More To Go

video
Max finished his first round of chemo today. He had shots of a drug called Campath one time a day for the last four days and, despite the fact that this round wasn't supposed to be too bad, it's been pretty rough. Overall, Max is doing well but, he's had some pretty major issues with his tummy, unfortunately, along with a rash and some achiness, similar to the flu. But, we've got the first round behind us now and we only have one more to go so, Max is on the way to recovery!

We had some fun tonight making some videos that we thought we'd share with everyone. As you can see, despite his tummy issues, Max is in excellent spirits overall. We've had our share of ups and downs but, mostly he's handled things amazingly well. He has not been out of this room since we "checked in" on Monday so, considering that, I think he's been quite unbelieveable for a seven year old boy!


We are hoping that the respiratory isolation he is in from a cold a few weeks ago will be lifted soon and he will be able to at least walk out in the halls and maybe even make a visit to the play room! Also, we are hopeful that he will get to walk out to the lobby with his mask on and visit with Alex and Ellee! That would just make all of our day!

We'll keep you posted as things progress. We have a ten day rest ahead of us so, hopefully Max's tummy will improve and we'll enjoy some time together as a family down here in the lobby!

Enjoy the videos and please keep up the prayers for our Magnificent Max!

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

Wednesday, March 11, 2009

Beginning Preparations for Ellee's Marrow

It's our third day here and all is going well, overall. Max had his first dose of chemotherapy yesterday and all in all, it went pretty well. He did have some issues with his tummy overnight, unfortunately, which we didn't expect at this point and is not that common with the current chemo drug that he is taking. But, they quickly gave him some nausea medicine to help and it is really working so far. He also got a fever and the chills during the night so, they also have him on IV antibiotics now. All of these are fairly "normal" side effects with this drug so, he is reacting as they expected already. And, the best part is that the drug is already doing it's job. During their rounds this morning, the doctors said that the levels of white cells that this drug is supposed to decrease are already down. So, the preparation is underway.

Max is in great spirits still. He received two special gifts from the Xavier basketball team already this week...basketballs signed by Dante Jackson, his favorite player (along with a personal note) and by Sean Miller, the coach! He was thrilled and shows everyone that comes in his room. Thanks to Uncle Jim and Kevin Toops!

My mom brought Alex and Ellee down here for a visit today and we had fun eating lunch together in the cafeteria and playing up here on the 5th floor. I also got home to see them yesterday, thanks to Mama (my Mom). She's been getting very good at Playstation basketball games! She's about the only one that can hold her own against Max so far! It's been tough on Alex, in particular so far as he is really missing his best buddy at home.

We'll keep you posted as things progress. Thanks for the continued support and all the thoughts and prayers.

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




Monday, March 9, 2009

Home Away from Home for A While

We're officially admitted down here at Children's now and getting settled in today. We are actually on the overflow portion of the Bone Marrow Transplant (BMT) unit for now which is good news because Matt and I can eat, drink and use the bathroom in Max's room for the moment. Once we transfer over into the BMT unit, we will have to go out of his room to do these things so, we are thankful for the extended opportunity to relax in his room! We will transfer over into the BMT sometime prior to the actual transplant.











I've taken some pictures of his room. It's quite nice really and he is very excited about it. He has a flat screen TV which he was thrilled about and there is a Playstation right in the room. When we came in, there were two new Playstation games sitting on the bed for him to play which really excited him. We also hung up his little XU hoop from Aunt Kimmy and he's been having lots of fun this afternoon "shooting some hoops" with daddy and I.

We are all glad to be beginning this process, as tough as it will be to not be together as a family for so long. Max actually clapped today on the way here when I told him that he was going to get Ellee's bone marrow on April 1st. He is very happy to be on the road to getting better.
So, we are definitely settling in today. Tomorrow will begin the initial immune suppressing chemotherapy doses. Max will have to receive a shot each day for four days of this initial medicine but, other than that discomfort, it should not make him feel too bad.

His blood levels were really low today so, he is going to receive both a platelet and a full blood transfusion this evening...so, thanks to those of you that donated at the blood drive at Wilson today! Already being put to good use by Maxer!

We are looking forward to watching the Dancing with the Stars premiere tonight and trying to get a good nights sleep!

As for visiting, the doctor recommended that we minimize the number of visitors in Max's room so, we are going to do that and try to keep it mainly to family members. However, if you want to visit, give me a call on my cell phone (608-9615) or send me an email (kmmaemeyer@yahoo.com) and we can have you come down and peek in his room to say "hi" and then I can take a short walk with you or something for a bit. Sorry about this...we just want to keep things as safe and healthy as possible for the big guy.

We'll write more soon to let you know how things are going. Thanks for all the continued thoughts, prayers and support.

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

Thursday, March 5, 2009

The Plan

We talked to Dr. Davies yesterday afternoon (Max's lead bone marrow transplant doctor) and we now have a plan. It is a mixed bag of good and not so good news. Max's bone marrow biopsy from Monday showed worsening of the bone marrow cellularity so, he absolutely needs a transplant and as soon as possible. We expected this but, still held out hope for something different. Unfortunately, there were no miracles at this point. So, we are checking into Childrens on Monday for our extended stay.

The not so good news of it all is that Max will actually have to be there longer than we expected...probably closer to 8 weeks now. However, that is because of the prepartory regime that they have selected for him which is actually part of the good news. The regime involves an initial four day dose of immune suppressing drugs, followed by eight days of rest before the chemotherapy begins and lasts about a week. So, for the first few weeks of our stay, Max should be feeling pretty good. It won't be until the chemotherapy starts that he will likely have some yucky side effects. Those remain the same as we've described earlier, to our knowledge (ie hair loss, nausea, mouth/throat sores, etc).

The actual bone marrow harvest from Ellee and transplant to Max is scheduled for April 1st at this point. Once Max gets the bone marrow, we'll have to sit tight in the hospital for the next fews weeks, watching and waiting, and hoping and praying that the bone marrow engrafts in him and begins producing blood cells for him without many complications. If this happens, we may be able to come home about 3 to 4 weeks after the transplant.

Once we're home, we'll still be "isolated" for some time but, I am sure it will feel like pure freedom after this long in the hospital! Max will not be able to leave his room while he is in the hospital all this time. It is a specially air purified room and they want him as isolated as possible to prevent him from catching any infection. Given this, we know that visitors will likely be a huge plus for us. I plan to be with Max the majority of the time and I know that it may be challenging to keep this active little 7 year old entertained for weeks in a 12 x 12 room! So, once we settle in next week and begin to understand visitation procedures a bit more, I will post information on the blog here so that you know what to expect if you are interested in visiting. I plan to ask you to contact me via email or cell phone so that I can manage the visiting a little. I do know that we can't have more than 2 visitors at a time and that there may be days that he will not be allowed to have visitors. If you're interested in visiting us in the hospital, check back here soon (next week) for more info.

We have kept busy here at home the last week or so and I've attached a few pictures of what we have been up to. Aunt Sarah and Uncle Ryan came over on Sunday for a Wii Fit Challenge and we had a ball watching Max almost "school" Ryan in how to play the soccer headball game. We also have played lots of basketball on our new Little Tikes hoop in the basement and built almost the entire Bikini Bottom Spongebob Lego set!

Max's spirits are still amazing and he motivates me every day to continue being as positive as possible about this situation. We are commited to making the best of this and getting through it while having as much fun as possible!

Max has also become a bit of a local hero here in Anderson Township. He made the front page of the Forest Hills Journal (our local paper) for the blood drive that Aunt Monica, Mrs. Hyden and Aunt Kimmy have put together. We are so touched and honored by everyone that has taken Max's situation to heart and is donating blood or platelets! It will be amazing to see how many people this will help, including Max.
I am so behind in sending thank you's to everyone that has done something for us! Just know that everything that everyone has done has brightened our days and made this all a little easier for all of us. We can't thank you enough!
Please continue your prayers...they are working!
Love,
Kristi (and Matt, Max, Alex and Ellee)