Sunday, May 31, 2009

Day +60: Home Sweet Home

video

Max is home again! Yippee! He was discharged from the hospital at about 11 am yesterday and was home at noon. The day was a blur of getting re-settled in and catching up on the normal household things that we weren't able to do while we were on our three day "vacation" to the fifth floor of Children's. :)

Max is doing great. He is thrilled to be home and feeling good overall. All of the blood cultures and tests that they took at the hospital on Wednesday were negative so we still don't know for sure what caused his fever. His ANC is back up to a good place, thanks to the help of a miracle medicine called GCSF which stimulates the bone marrow to produce cells, white cells in particular. I was trained in giving this at home and more of it will be delivered today. We will be anxious to see what is level is again on Tuesday at our Clinic visit just to be re-assured that it is continuing to climb and stay up where it should be.

We got to visit last night with Matt's sister, Molly and her husband, Jim and their two boys, Andrew and Jacob. Today is day +60 when Dr. Davies said that Max could have a friend over and he was just dying to play with someone all day yesterday. So, we decided that since his ANC was back up and the Brownley family was healthy, it was time to make it happen. We believe that we need to constantly balance the psychological aspects of this experience for all of our kids along with the physical ones. We know that feeling good mentally and being happy contributes tremendously to Max's healing. Getting to see his cousins last night and his Aunt and Uncle really brightened his whole day (more like his whole month...even six months)! It was a wonderful treat for all of us.

That's about it to report today...thankfully. Back to the same old, same old...and it's never felt better! I can't tell you how nice it is to be able to tuck all your kids into their own beds at night and then slip into your own sheets in your own quiet house...only to be followed the next morning by waking up with your whole family under one roof! The simple things I took so for granted in the past! Never again.

Thanks for your continued thoughts and prayers. By the way, this may sound unbelieveable and we didn't capture any pictures of it this time but, two of our neighbors called last evening to tell us that there was another perfect rainbow right over our house! We thought it was a beautiful sign of love from above the first time...now we know it was...twice! Someone else is very happy that we are all home together too.

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

Friday, May 29, 2009

Day +58: Looking Good To Go Tomorrow














Much better news today. Max's ANC has shot up to 1560 with the GCSF medication that they are giving him so it appears that it was just suppressed from the gancyclovir and maybe some virus, although they have not found him to be positive for any virus yet. His fever has still not returned either and he is feeling good...eating and drinking well and generally enjoying the day, with the exception of not being able to go home today. He threw a bit of a fit when I told him that the doctors wanted him to stay one more day. It's a good sign that he wants to get out of here. Tells me that he is feeling just fine and ready to get back to his normal activity at home.


The doctors are just waiting on final results from the blood tests and cultures that were sent to the lab on Wednesday shortly after we got here. Some of them take 48 hours to "grow" to be sure there is no infection present. So far the ones that they have gotten results back from have all been negative. All excellent news.


We're just waiting things out now. As long as there are no more fevers and his ANC and all blood results look good tomorrow, we'll be on our way home! Yeah! I keep telling Max to look at this as hopefully our last night in the hospital forever! May be wishful thinking but, it won't hurt to hope for that!


I have touched base with several of the families that we met while we were originally here for Max's transplant and things are not as positive and encouraging for many of them. Particularly, two families that we met with sweet baby boys are having tough times right now...send positive thoughts and prayers to Brayton and Ethan and their families please. In addition, one family who is going through their second transplant with their second son, Troy is having a really hard time so please keep them in your thoughts and prayers too.


We have always felt blessed with our situation with Max, as hard as it has been, because things from many perspectives are "best case". We are very reminded of that being back here and hearing the struggles that many of the BMT kids we met are having. The fact that Ellee was a perfect bone marrow match for Max is one of the many blessings that we were granted in this situation and, we and the doctors believe, has definitely helped in making things go as smoothly as they have for Max. Many, many other kids are not blessed with sibling matches or sometimes even non-family matches that are "perfect." Thus, we wanted to make an appeal to all of you to consider registering for the National Bone Marrow Donors registry. The National Marrow Donor program is running a campaign from June 8 - 22 that allows the first 46,000 people to register for free. You can register online and a cheek swab kit will be sent to your home. Go to http://www.marrow.org/ for more information.


I am heading home tonight to be with Alex and Ellee. They are doing well but definitely miss Max and the "normalcy" of being all together at home. We all got used to it and spoiled by it again! This is another reminder of the beauty and wonderfulness of the simple things! Ellee has even shown that she is capable of understanding at just 19 months old when things are not the same. Yesterday she looked at the side of the fridge where we had kept a countdown of the days until Max came home from the hospital when we were here for the transplant and said, "Maxi hopital" (as if to say, "when is Maxi coming home from the hospital?") It's amazing how this has impacted all of us...even little Ellee...in so many ways!


A friend of mine took some shots last week of the boys playing basketball in our basement...as you all know by now, their favorite current past-time. I thought I'd include some of the shots on the blog. Max loves them and feels like they fortell of his and Alex's future careers with the NBA! Hope you enjoy them too.


Thanks for your continued support and for keeping us all in your thoughts and prayers. More from home tomorrow or the next time I get a few quiet minutes with the computer!


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

Thursday, May 28, 2009

Day +57: Settling In But, Hoping To Get Out Soon!

What a trooper our Maxer is...a mom could not be prouder! We have settled in down here for the time being and Max is just handling the transition again like the champ that he is. He is feeling much better. His fever has not returned since yesterday morning and overall he is feeling good. His ANC (the infection fighting white cell count) was up this morning to 190 from 30 yesterday. It's still well below where we'd all like it to be but the improvement is an encouraging sign. We are still hoping (including the doctors) that it was reduced from the gancyclovir and maybe some little virus that he had yesterday, given the fever, etc. Thus, the plan is to monitor things for the next two days and wait for his cultures (blood tests) that were taken yesterday to come back to be sure nothing else is going on. If the cultures are all negative and his ANC continues to improve and gets closer to the 500 mark, we may be out of here on Saturday. We're keeping our fingers crossed and saying our prayers!

Max has been hanging in there enjoying the day laying in bed, ordering from the cafeteria menu (we just ordered some glazed donuts a minute ago), watching Home Along (he's never seen that movie and I'm getting desperate for new ones at this point) and playing Playstation! He's anxious to get home with his brother and sister and bummed that our big day +60 playdate with cousins Will and Ben may have to get postponed a bit. But, as always, he has been extremely mature in his response to everything and has understood why we need to be here and the importance of all of it. He knows, as we do, that with time, things will be back closer to the "way they were" and we will be able to resume all of our normal fun activities.

I am better today, to say the least. Yesterday was one of the low points in this journey for me and I'm glad it's over. You know it's bad when your son and his nurse are laughing because Mommy can't stop crying! I just couldn't talk yesterday without losing it. I knew that we would probably have to do this at some point but, as the days went on, I felt like it was less and less likely and maybe we would make it through without having to do this again. Now that I've been up here with all our familiar doctors and nurses, I feel much better about this and know that it is a normal part of the marathon journey. Bad days happen to everyone around here and everyone around here understands and is compassionate when you have one.

I met a dad in the parent lounge this morning that was just admitted last night about the same time that we were. He cried to me about his 21 month old son who they discovered yesterday has a growth on his liver. They will be doing testing the next couple of days to determine exactly what it is but, he is scared, of course, and struggling, to say the least. My heart went out to him. I have been there and it is the toughest part...the not knowing. I found myself there again yesterday in this process and it is so hard. Your mind just wanders and worries about all things that could be possible. Another lesson in why it's so important to live in the moment...and so hard to do so sometimes. Please keep this dad and his son, Maddox, in your prayers, as well as all the other families and patients on this fifth floor and in this hospital. We could all use them!

We'll write more tomorrow as things progress. Thanks for your continued support and caring. It means the world to us.

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

Wednesday, May 27, 2009

Day +56: Not Where We Want To Be

It's day +56 and overall it's been a bummer of a day! Max was up during the night with a slight fever and nausea and when he woke this morning, his fever was up over 100.5 degrees. We called down to the hospital and they told us to head down so that they could fully check Maxer out. We spent almost 7 hours in a private room in the emergency room (yuck) and then were finally admitted and taken up to the fifth floor (our old stomping ground). So far today they have not determined what has caused the fever for Max. They have drawn a bunch of blood cultures to check for any signs of viral or bacterial infection and should know more tomorrow.

The only thing that we know for sure right now is that Max's ANC (his infection fighting white cell count) is WAY down. It is at 30 when at one point it had been up as high as 6,000 post transplant. It should be at least 1,500 and was holding at about the 2,000 - 3,000 range for a few weeks. But, as we reported in our last blog, it had fallen down over the last week to a critically low level again. As of last Friday, in an effort to increase the ANC, they stopped one of his anti-viral medicines and gave him a dose of GCSF which is supposed to help boost white cell production. However, after another dose of GCSF today, the white count has still not recovered. So, we also have to figure this out while we are here. They are going to continue the GCSF for the next few days to see what happens and if the counts still don't recover or another cause isn't found (ie viral or bacterial infection), we will have to do some more testing. That part gets a bit scary and unknown to us right now...they have just mentioned a few things about the possibility of white cell antibodies or graft rejection. For now, I am holding onto the hope that the white counts are down from some other cause...either the gancyclovir still or some infection.

Anyhow, this is NOT where we want to be. It has been extremely difficult for me today. I just don't want to be separated from Alex and Ellee again, although I know we have to do what we have to do to get Max healed. It's just disheartening right now being here again and having these issues to deal with, along with being separated as a family again. As I've said to Max many times today, "this just sucks...but, we've gotta do it."

So, please keep your thoughts and prayers coming. We knew to expect to be re-admitted along the recovery path but, it doesn't make it any easier on any of us. We were so enjoying being home together and even a minute apart like this again is tough for all of us. We appreciate all your positive vibes and prayers and know that they will make the difference in getting us all back together as soon as possible.

More as we know it.

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

Friday, May 22, 2009

Day +51: Happy & Thankful for the Same Old, Same Old

Today is day +51 and, much like most days recently, it has been uneventful and somewhat boring...THANK GOD! Max had an appointment at the Day Hospital today at 7:30 am so, we were up and out the door early. It went well while we were there. Max received an infusion of a medication called IVIG (stands for IV immunoglobulin) which is created by filtering immunoglobulins out of multiple people's blood. He is receiving this medicine every other week right now to get him through the most critical phase of immune suppression. We were told by one of the nurses in the hospital that each bottle of this IVIG cost $16,000! That's right...you didn't read the numbers wrong! $16,000 a pop! On the off weeks from IVIG, Max is getting another similar drug called Cytogam. It is just like IVIG but, filtered further to get just the immunoglobulins that fight the CMV virus. So, I'm sure it is equally expensive...maybe even more!

We truly are not concerned with the cost of things right now. I just share that with you to share our shock at the cost of some of this treatment. Of course, we are doing whatever it takes to get Max healed and back to "normal." Our insurance has been wonderful so far so, we are hoping that will continue. One day we are sure that we will understand the full extent of this treatment and the total cost but, until then, we do as the doctors say and know we will figure out a way to cover things later.

We got continued good news today about Max. His CMV level has decreased to the point that it is barely recognizable anymore (thanks to the Cytogam discussed above and the Gancyclovir that he has been treated with over the last several weeks). One thing that was of concern this week was that his white blood cell count was fairly dramatically reduced. However, Dr. Davies is suspecting it is from the Gancyclovir that we have been using along with the Cytogam to treat the CMV. So, given that Max seems to be fighting off the CMV now, we are going to discontinue the Gancyclovir for now too. This is great news again because it is the last IV medicine that we have here at home! Thus, Max will not have to be connected up at all! We may have to go back to using it in the future, should the CMV start to rise again but, for now we are thankful for this progress.

In addition to all this, we are almost done with the steroid that Max has been on. We have been weaning it slowly over the last four weeks and he is on the last week of it! It is going well as no signs of Graft vs. Host Disease have showed up! It becomes clearer to Matt and I everyday how much Max and Ellee are alike...and Max's body's acceptance of Ellee's marrow just confirms this fact! They are cut from the same mold!

Overall Max is making great progress. As I tell Max all the time, he is doing a wonderful job taking care of himself and it is showing. He is taking it easy and is resigned to the fact that he can't do his normal things right now. We look forward greatly to little milestones - like getting to play with his cousins after day +60; getting to go outside without his mask after day +100; and the possibility of having his central line removed around day +100! All small steps in the right direction and toward a bright future with all this in the past.

Post the +100 day mark, we will still have challenges as the entire first year will be needed to rebuild Max's immune system. Thus, Max will still be under some restrictions. In particular, he will not be able to return to areas where there are lots of people and potentially lots of germs. Church, school, shopping, restaurants, swimming pools, etc will still be out until probably next April. Although, Max would say, "I'm OK with it"...there are a lot of other things for a seven year old to do without going to these places! Once he can play with a few friends and get outside without wearing a mask, he'll be in heaven for awhile!

This experience has changed all of us in many ways. We are realizing that more and more everyday. The little bit of normalcy that I have had in the last couple of weeks has made me realize what a different world that we have been living in for the last four months. I know that I am forever changed from this...I'm just not sure what it all means yet. My eyes have been opened to so much need and suffering and I really want to be able to do something about it. My struggle at the moment is what and when. I'm not ready for "it" yet and don't know what "it" is yet but, I'm going to work on "it" and figure "it" out! So, if I see you and act goofy or seem like I'm not all there, you'll know why. :)

Thanks for your continued support, concern and care. It really means a lot to us to know that people are still following along with us on this marathon journey and keeping all of us in their thoughts and prayers.

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

Sunday, May 17, 2009

Day +47: A Tribute to a Special Friend

We have already told you about the awesome "music man", Brian Schreck (in the picture with Max) that works at Cincinnati Childrens Hospital that visited Max many times and recorded him singing "Home" by Daughtry. But, we wanted to share a special story with you about him that our local news did on Friday night (see the bottom of this entry for the link to the story). We saw him as we were leaving the Day Hospital on Friday and he told us that they were coming to do a feature story on him. He is such a great guy and does such wonderful things for the kids (as he did for Max) that we wanted to share the story with you.


We also thought that it was an invaluable way of giving all of you just a little bit of insight into what it was like to "live" for six weeks on the fifth floor of Childrens. The inpatient portion of the fifth floor is half the BMT unit and half the oncology unit (ie the cancer treatment center). The story about Brian was taped on the oncology side of the fifth floor...where we "lived" for the first two weeks of our stay. We were right across the hall from Natalie Bradley, the young woman highlighted in the story. We got to know her parents a bit and saw her family coming and going regulary.


We don't share this with you to depress you...although we will tell you that it is very difficult to watch. We share it with you to share the greatest learning that we have had from this experience...live in the moment. You just never know what tomorrow will bring so, live in today, in the now and make the most of it.


Enjoy the video and the wonderful things that our friend Brian does for the sickest kids in Cincy.


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


Friday, May 15, 2009

Day +44: Progress & Healing

I didn't want to wait to share some great news that we got today while down at the Day Hospital...not only does Max remain 99.2% engrafted with Ellee's marrow (which means it is now THE marrow in his body and is producing his blood cells for him) but, he is making HUGE progress with his recovery. Dr. Davies decided today that his CMV level was low enough that we could go down to once a day dosing with the gancyclovir (one of the IV meds that I have been giving Max here at home twice a day since we were discharged) for the next month and then likely be done with it! In addition, she recommended switching Max from IV cyclosporine over to oral which means that we now only have to hook him up to an IV pump to give him medicine for about a hour once a day! Sure beats the 4 hours that he had to be hooked up before and really starts to give us our lives back! Max is pumped about the idea of being able to play basketball for as long as he wants in the evening with whatever willing opponent might be around (Daddy, Gaga (Matt's Mom), Papi (my Dad), Aunt Sarah, Uncle Ryan, Alex, even Ellee). Mommy could actually "get out" a bit in the evening if I wanted to and not have to worry about rushing back home to be "Nurse Kristi" and administer IV meds! WOO - HOO!

I can't tell you how good these small steps feel to all of us. These come sooner than we expected and it just makes us feel like we are getting closer and closer to the end of all this craziness...although we still have a long way to go. But, it means so much just to have this progress and to know that Max IS getting better every day!


I just wanted to bring a smile to everyone's faces again this weekend and to thank you all, again, for your continued and unending support and love. We still feel your caring arms around us and know that your prayers are being heard and answered in the best possible way. Thank you all for sharing in this journey with us and for cheering Max on! As the doctors have told him many times, he is a total "champ"!


Love,

Kristi (and Matt, Max, Alex and Ellee)


Monday, May 11, 2009

Day +42: Counting Down the Days

video

Today is day +42 and Max continues to do well, thank God! His blood counts are great (approaching normal for all three major cell lines - white, red and platelets), his CMV level (the virus he has been positive for) is decreasing and his energy seems to be growing every day. Overall, he is physically doing quite well at the moment and we hope and pray everyday that this will continue until he is fully recovered. The toughest part of things now is the mental portion of this journey. Max is definitely enjoying being home but he is really missing being his normal self. He can only go outside with a mask on to filter out any mold spores or other potentially harmful airborne items and he has to be extremely careful about sun exposure as it could trigger graft vs. host disease. So, he has chosen to stay inside at this point which, as my neighbors can vouch for, is not typically Max's choice, by any means. He is an outside boy who LOVES to ride his scooter and bike and practice his tricks on his ramp out in our street. In addition, he can't have any friends his age over at this point and he is a very social fellow so, he is bumming from that as well.

However, we did get some good news from Dr. Davies last Friday at our Day Hospital visit. She told Max that he can likely have a friend over around day +60 (just 20 days away) and that he can probably go outside without a mask on around day +100! Those both perked him up! We immediately called our cousin and best buddy, Will to be sure that he has May 31st reserved for playing with Max! He was thrilled to hear about that possibility as well and the two of them are counting down the days (as well as Alex and cousin Ben, Will's brother)!

We are continuing to stay busy around the homestead. Legos and video games are a HUGE help! We do LOTS of those everyday. In addition, we continue to play at least three games of basketball in the basement each day and the boys always beat me! They are getting really good at shooting three pointers and dunking! They have really enjoyed watching the NBA playoffs and are giant fans of Lebron James and the Cavaliers. I asked them to help me make another video for the blog and of course, they wanted to make it shooting hoops (thus the attached)!

Last week Max looked in the mirror and noticed that his eyebrows were becoming a "unibrow". This is common with the steroids that he has been taking as are other forms of facial hair, in addition to the puffy cheeks and belly. After he noticed his eyebrows, he said, "I have a mustache! AWESOME! I have a mustache!" I thought I would share this story and give you all a little view into his amazing attitude. He really lifts Matt and I all the time. He has continually approached all of this as an adventure and accepted all the changes with such an open mind. He even thinks having a mustache at 7 is cool! :)

We have lots of funny and touching stories like this from our journey. I thought I'd share a couple more to give you a good laugh and to get them documented in the blog for the future.

One morning in the hospital, the doctors were talking to us about Max getting Ellee's marrow and how it would work. Suddenly, Max threw his hands up to his head and said, "am I gonna be a woman?!?" He really thought that after getting Ellee's marrow, he was going to turn into a girl.

On Easter Sunday at about 2 am, Max and I were sleeping in the hospital and I was disturbed by the toilet flushing. This was a very common occurrence and usually didn't bother me at that point but, I heard it and noticed a man coming out of the bathroom. I was a little startled because the PCAs who measure the "output" (pee and poo) from the patients as well as other things, usually introduce themselves before you go to bed and we hadn't met this guy. Anyway, he went over to the sink in the room and started washing his hands. At that point, Max got disturbed and sat up in bed, looking at the man. Then he quickly laid back down. After the man left the room, Max sat up again and said, "mommy, mommy...I just saw the Easter bunny! He has glasses and a mustache!"


I was tucking the boys into bed recently and Max said to me, "mom, we owe God big time." I responded that I knew we did but, why did he think so. With that he said, "because I haven't had any fevers!" So true....someone is watching out for us. A fever would send Max back into the hospital for at least three days.

One more quick one...two Sundays ago after Max got sick to his stomach from the potassium adjustment, I told him that I needed to call the doctor on call down at the hospital to let them know what was going on. He responded, "mom, if they say that we need to come down there and sleep there tonight, I'm ok with that. Even if we have to stay for 5 days, I'm ok with that. But, I AM NOT staying for 2 weeks!"

Hope you enjoyed these little quips. Life is good right now, despite the massive changes in it! We had quite a busy Mothers Day and I actually said to Matt, "I am really starting to enjoy our simpler life!" It is going to be a tough transition back to full reality in the future. But, we've got lots of time to work our way toward that. In the meantime, we'll enjoy the simple pleasures that just living in the moment and hanging out at home has brought to our lives. More soon.

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

Tuesday, May 5, 2009

Day +34 and All is Well

video

Today is day +34 and all is well...Max is continuing to do well. He has had a bit of a rough time with his stomach again recently due to potassium and magnesium supplements that he was put on Friday to raise his levels of those two electrolytes. However, we are getting it under control more and more each day and, with time, his body should adjust to the new supplements and the nausea should stop.

We are definitely beginning to create a "new normal" around here. We are now down at the hospital on Tuesdays and Fridays to have Max checked out and to receive many IV meds that I cannot administer here at home. The appointments range in length from 2 to 10 hours, depending on what needs to be done and what comes up while we are there. One thing I've definitely learned through this process...hospitals do not move fast! But, we've learned to settle in down there and expect to be there for some time. We always bring good videos and games and Max always requests a portable video game system to play while we are there too. Alex has been coming with us most of the time as well so, having his best buddy there helps to pass the time more quickly as well.

I thought I would take a minute to explain a bit about where Max is in the marathon transplant process again so that everybody has a little better idea of what still lies ahead. As you all know from reading my past blogs, we are now in the final stage of the process, the growth and recovery phase. This is definitely the longest phase of the process for us. As far as I understand it at this point, this part of the process can be broken down a bit. The first +100 days post transplant are still a very critical time for BMT patients. They are under extremely close medical supervision, as Max is with our bi-weekly visits to the Clinic/Day Hospital. If they have a fever of 100.5 or greater, they must be admitted to the hospital for a minimum of 72 hours of supervision to rule out an infection and to be sure the doctors can take action as needed to help them fight the germ. We have a long list of items that warrant an immediate call to the BMT doctor on call. We just had to do this on Sunday because Max got sick to his stomach and had a bad headache. Once we talked through things with the doctor on Sunday, we all agreed that the likely cause was the new supplements and decided to monitor things. Luckily, Max improved that afternoon and we didn't have to make a quick trip down to the ER to have him evaluated.

The primary reason for this strict isolation is the lack of an immune system in Max right now. Although his white cells are re-building (thanks to Ellee's marrow) which makes him capable of fighting some bacterial infection, he has no t-cells at the moment which are used by the body to fight off viral infection. Part of the reason for the lack of t-cells now is that Max is on a pretty high dose of steroids which suppress the body's ability to create t-cells. The steroids are helping to prevent graft vs. host disease (GVHD) which would occur if Ellee's t-cells attacked Max's body. Thus, Max began a very gradual and carefully monitored process of weaning from the steroids this week. It will take place over 4 weeks and as long as no signs of GVHD occur, he should be done with the steroids and producing t-cells soon.

So, although we are home and are creating our "new normal", it's a bit like living on pins and needles. We never quite know what might happen each day. We wouldn't trade being home for anything but, living through this first 100 days post transplant is a bit nerve racking! As you all know too from reading the blog, Max is also under strict isolation orders. Basically that means that no one under age 12 can visit him (except for his siblings that live here, of course) right now and that no one with any signs of infection (ie even a runny nose or scratchy throat) can visit. In addition, it means that Alex and Ellee need to be equally isolated for now to prevent them from bringing anything into the house. If they were to get any signs of sickness, we would have to "ship them out" as our doctor put it, to a relatives house or something until they were well again. So, to avoid any further separation as much as possible, we are isolating Alex and Ellee as well for now. They cannot play with other kids like Max (we have let them a bit outside with super good hand washing) and can't even be babysat by Aunt Monica while I take Max to the hospital if cousins Will and Ben are there. It sure makes things tough! But, we keep focusing on the fact that all of this is temporary and with time, it will all be over. It is so worth it to give up these bits of freedom right now to gain back the rest of Max's life!

Once Max reaches the +100 day mark, the doctors will do some testing of his immune system to see where things stand. If he shows some t-cell growth, etc., they may lift some of these restrictions and let him play with one friend here at home or something and Alex and Ellee may be able to get out a bit more. From the +100 day mark on, the immune system just needs time to keep growing and rebuilding to what it was pre-transplant. It usually takes about a year for a BMT recipient's immune system to be back to full strength but can vary from 6 months up to 2 years. Max will not be able to return to places where there are lots of people (ie stores, school, restaurants, church, etc) until the doctors determine that his system is back to full strength.

As I've said many times throughout this blog, we are in for a long haul still. But, everyday brings us closer to the end of this isolation and closer to a return to full health for Max. We greatly look forward to the days when we can do "normal" things as a family again but, in the meantime, we are making the most of this time together. I absolutely know in my heart everyday that there is going to come a day in my future when I look back on this time and treasure it, as difficult as it has been on everyone (especially Max) to go through this. I have always loved my family but never as much as I do now...never have I enjoyed them and appreciated every single minute like this!

I thought you all might enjoy the attached video of our lazy Saturday morning last weekend. We do a lot of cuddling and are having lots of jammy days lately. It's a treat!

We think constantly about the families that we met during our stay in the hospital and keep up with their child's progress on their individual blogs or websites. Many of them are facing so much more than we have and have been so inspirational to us. On Mothers Day, please say an extra prayer for all the moms that are in the hospital here in Cincinnati caring for their little ones. They could use all the energy, strength and patience they can get!

I promise to keep updating all you faithful followers at least once a week or more often as we have news. Thank you so much for your continued support, thoughts, prayers, gifts, cards, meals, etc. We have felt your loving arms around us throughout this ordeal and know that they will continue to be there until we have that GIANT party in 2011!

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