History

Journal History

Tuesday, May 15, 2007 11:31 AM CDT

This update is long overdue...but worth the wait. All is good here. A couple of weeks ago, Matt had his six month check for CML done (PCR testing). We had the blood drawn at Schnieder and the test done in Seattle. Once again, we have been blessed with good news...Negative/Undetectable. All his other tests were in the normal range. We have an appointment with the endocrinologist next month and will do a growth hormone test since his growth does seemed to have slowed a bit. Also, we started him on thyroid meds as that number was just beginning to get out of range and we want to keep everything in line since we know he is at risk for thyroid damage from the radiation. The good news is the meds have no side effect and it's one small, easy-to-swallow pill each day. Other than that it's all good.

Everyone is doing well in school. Mike is doing especially well. He was inducted into Honor Society a few weeks back and is keeping his average in the 90's. He is playing Lacrosse for the school team and the club team, so that keeps him pretty busy. Matt is playing lacrosse for the club team and Kate is doing soccer and lacrosse too! Most of our weekends are spent on a field, but we've had good weather the last few weeks here, so no one is complaining!

We're looking forward to a relaxing summer, that is a little less hectic than the schedule we have now. Hoping all is good with anyone who still checks in on us...drop us a note to let us know you're out there!

Take good care,
Krista

Wednesday, December 20, 2006 10:21 AM CST

Hello everyone. Just wanted to do a quick update to say all is good here. Busy, busy.

Tomorrow it will be four years to the day since Matthew was first diagnosed with leukemia. How grateful we are to be where we are now...still. It really is a miracle. In case you missed it, the latest test results from November still show Matthew's leukemia in full remission (PCRU). So it's obvious, Mark and I got what we wanted for Christmas. Everything else is good. Unfortunately, Matt has to get two teeth pulled tomorrow (bummer), but I can't say that has anything to do with having a transplant.

Mike and Kate are doing well...and everyone is looking forward to a break from school. We are laying low and don't have any big trips planned. 2007 is a different story...a bunch of road trips on the radar will keep us busy and kids entertained.

Well, gotta scoot. Have a Happy Holiday and Healthy New Year.

Krista

Tuesday, September 12, 2006 9:21 AM CDT

*** Updated 11/27/2006 ***

Hope you all had a wonderful Thanksgiving. We are most thankful for Matthew's continued remission. The most recent molecular PCR testing done in Seattle remains "Negative"...Thank God and thank you to everyone who continues to keep Matthew in their thoughts and prayers. Full update coming soon...

**************************************

Three and one-half years post-transplant

Well, the kids are all back to school and so far, so good. Matt, now in the fifth grade, is in his last year of elementary school and has the same teacher Michael had, Mr. B. This is a great thing since Michael had such a great experience with him and Matt is psyched to have the same. Medically, things are going very well. Since the last update, the only out-of-the-ordinary specialists we have seen are the dermatologist (full body exam, all good) and the endocrinologist (staying on the growth curve nicely, no need for intervention, will check in with her again in 6 mos.). Our next important visit will be in October, for blood work and exam. We’re doing PCR testing every 6 months and sending samples to Seattle for review. Keep praying for that NEGATIVE result that we have been blessed with since 6 months post-transplant. Matt has stayed healthy otherwise and has not required any visits to the doctor for any illness. He doesn’t take any meds and loves being normal. We don’t talk about what he went through much at all. I really think he has put it behind him and whenever the subject of “Seattle” does come up, it is always about something that had absolutely nothing to do with his treatment or hospital life. They all (Matt, Mike and Kate) do seem to have fond memories of the time we spent there, well…at least that’s what they talk about on the rare occasion that it comes up. Matt’s back to playing flag football and is continuing his clarinet lessons in school. He really seems happy and well-adjusted and most days I am overwhelmed with how much we have been blessed.

Mike just started seventh grade and is going out for the football team. He is really busy during the week and I am nervous about how challenged he will be once homework really gets going. He has stepped up to the challenge of getting himself organized at school and we are really proud of him. He has a great group of friends and still tells me and Mark things, so we need to keep that going as long as we can.

Kate is now in first grade (woo-hoo from me, as our Kindergarten was only half day) and has the same teacher Matt had when he was diagnosed in the first grade. She is doing great too and loves that she gets to eat lunch in school. She is playing soccer again and is enjoying learning the game and having fun.

The summer flew by; as I am sure it did for everyone. We took a few weekend trips here and there, did a few camps and basically enjoyed relaxing by the pool, going to the beach, having fun tubing on the boat, and spending time with family and friends.

Leaving you with a few updated photos in the photos section. Check in again early November for an update on Matt’s important tests.

Krista

Tuesday, May 16, 2006 8:02 AM CDT

Just a quick update to say that all is good here.

Everyone is doing fine...Enjoying normal things like school, sports, and fun with friends. Mike and Matt are both playing lacrosse and doing great and Kate is playing lacrosse and soccer. She is really loving it and at the risk of sounding biased, she is doing awesome. It is really clicking for her.

On the medical side of the fence, we were once again blessed with good test results for Matt...'UNDETECTABLE' at a molecular level for bcr/abl by PCR (translation, no disease detected at the highest level). Thank God. All his labs are in normal range. We will need to keep at this, well, probably forever, but as long as we hang on to where we are, it will be good. We did get good results back from the endocrinologist also. This too, we will have to keep a watchful eye on, but so far, he has stayed the course with his growth, not falling off the curve since the transplant, and his labs are all in normal range. We did visit the eye doctor and she said his vision is 20/20, but she does see two cataracts, one in each eye. This also, we will keep an eye on (no pun intended). At this point, since they are not interfering with his vision, we do nothing. Hopefully it stays that way for a long time. But if they do start creating problems, we will get them removed.

Trust me when I say, at three years post-transplant, there are so many more significant problems he could be facing. We have so very much to be thankful for.

I don't have any updated photos, but will try to take some of the kids and our sport-filled weekends and get them posted, so check back again soon.

Love,
Krista

P.S. Just a final update on the St. Baldrick's Foundation, the boys rose over $8,000! And our location here in Northport is up to over $385,000 (holding the number one spot for funds raised in the WORLD). In it's 7th year, the Foundation has succeeded in raising over $7 million this year to aid in the fight for finding a cure for all pediatric cancers. All I can say is WOW, and THANK YOU to everyone who helped by donating. For more, check out
http://www.stbaldricks.org/locations_locations.asp

Tuesday, March 21, 2006 8:18 AM CST

Mark and I would like to deeply thank everyone who made a contribution to the St. Baldrick’s Foundation. The boys had a great time at the event and we are so proud they rose over $7,000. Check out http://www.stbaldricks.org/ShaveePhoto.asp?SolNumber=15329999 to see how they did. Because of their sacrifice and your generosity, the St. Baldrick’s Foundation can continue their important work in funding research that will one day lead us to a cure for all childhood cancers.

The boys led a team (Northport Lacrosse Club & Friends) which rose over $20,000 and the event here in Northport this past Saturday collected over $220,000…and they’re not done counting yet! In the coming months, more locations around the world will continue to host the head-shaving event, but for now, our location is in the lead. Thank you for encouraging us to be a part of such a wonderful cause. We feel so blessed.

One of the families who spoke at the event talked about their 12 year-old daughter. She was diagnosed with leukemia and had a bone marrow transplant from her brother who was a perfect match. Tragically, she relapsed and passed away after a brave battle. While the dad was choking back his tears, telling his daughter’s story, Matthew was on stage getting his head shaved. I wondered if he understood what was going on. Was he listening to this man? Did he see the similarities in his own life to that of the young girl this man was talking about? He knew he had leukemia…He knew he had a bone marrow transplant from his brother who was a perfect match…I wished so badly that he wasn’t on the stage at that moment. I wished he was outside running around in the sunshine with all of his friends. I didn’t want him to think what happened to her would happen to him. But it could have. When the man was done talking, and Matt was done getting shaved, the organizer of the event asked Matt to stand up and introduced him as someone who had cancer and beat it. The timing of this was not planned…ironically it just worked out that both things happened simultaneously. As it turned out, Matt did listen to the man’s story and he did understand it. How could we feel anything but blessed?

Over the next few weeks, until everyone’s hair starts to grow back, the bald heads will remind us of St Baldrick’s noble mission – finding a cure for this terrible disease. It’s not just about feeling bad for the children who loose their hair to cancer; it’s about putting an end to the children who loose their lives to cancer. Donations can still be made online or by mailing in a check.

Thank you again.

Sunday, February 26, 2006 8:26 PM CST

Dear Friends and Family,

We are hoping we can count on your support, once again, as this year’s annual St. Baldrick’s Day draws near. For those of you not familiar with the event, its goal is really quite simple: Raise money for the worlds leading childhood cancer research network (Children’s Oncology Group – COG) so they can find a cure.

Before December 21, 2002, we had never heard of the COG. But when Matthew was diagnosed with leukemia, our world changed in an instant and COG was one of the first organizations we came to learn about. They comprise a network of physicians, nurses and scientists who conduct clinical trials in childhood cancer and perform cutting-edge research at 230 top medical institutions, representing every pediatric cancer program, treating over 90 percent of children with cancer in North America. In plain English, when parents (like us) are faced with the overwhelming decisions regarding treatment choices for their kids, the most important thing they need to know is what option will work the best. Thanks to the collaborative research efforts of COG, that information is available, and every day we learn more. Because of this group’s work, children at any COG institution have access to the expertise of the entire group, and progress in research comes much more rapidly than if each institution’s research team worked alone. We could not have made good decisions about Matthew’s care without the work of this group. Thankfully, Matthew’s treatment has given him a cancer-free life for the last three years and we are so very hopeful for the future.

Over the past six years St. Baldrick’s has raised over $12 million for the search for a cure. The 2006 season promises to be even more successful and the boys have a personal goal of $5,000. Last year they raised over $6,000, thanks to your generosity, so we are hoping for the same level of support to help save young lives. That’s what this is really all about...making sure the generous donations made by you all is given to a fiscally responsible organization who works toward the goal of one day finding a cure for all pediatric cancers.

You can help. Cut and past the following link to your web browser and make a tax deductible donation in Michael and Matthew’s name.

http://www.stbaldricks.org/ShaveePhoto.asp?SolNumber=15329999

You can contribute online or through the mail. The local event here in Northport is on March 11, 2006. With only two weeks left to get sponsors, we have our work cut out for us.

We are proud to be a part of this important national event. Last year, our location here in Northport “became the single largest event in St. Baldrick’s history, shaving more than 600 heads. It’s a wonder anyone on Long Island was left with hair!”…That’s a direct quote from the 2005 St. Baldrick’s Annual Report. Matthew is one of the children being honored at the event here in Northport and we hope that helps in making 2006 the most successful year ever.

Thank you,
The Bolands
Mark, Krista, Michael, Matthew and Kathryn

Saturday, December 17, 2005 4:17 PM CST

Two Years 9 Months Post-Transplant

Merry Christmas…It sure has been a long time since I last updated this…you can take that as a good sign.

Above is the latest news on the Matthew health front…continued remission at the molecular level. Truly, a miracle it is. We are always just a little anxious every six months or so, when we do this test…and that will continue for at least the next couple of years, or maybe longer. But as long as we keep seeing that ‘Negative’ word, we can deal.

He is doing so well. In school, in sports, with friends and with family (him and Kate just don’t always gel)…It’s all good. We do have to see an endocrinologist at the end of January for evaluation. He seems to have slipped a little on the growth chart. When Matthew had the radiation treatments in preparation for the transplant, it was clearly explained to us that his growth would likely be affected. It is one of those “late-effects” we have been looking out for. But we’ll see what the Dr. has to say before we get all excited about anything.

Kathryn, our other medical challenge in the family, is doing great. She had to have a “little” surgery to remove a cyst (very, very small) under her eye. The anesthesia was the worst part of the ordeal. Thankfully the pathology report came back ‘benign’ and there is no visible scar. No explanation as to what caused the ‘calcified cyst’ though…. Her other issue is the HSP (Henoch-Schönlein Purpura) that is taking its sweet time resolving…but there again, she is moving in the right direction and we just have to keep having her urine checked to make sure the kidneys are healing themselves up. So far, so good. She LOVES kindergarten and has adjusted really well.

Michael, the boring child in the world of medicine, is also doing great. Loves middle school and even made the honor roll. We are really proud of how hard he has been working. Not to mention, playing football, and now basketball and indoor LAX. The months have flown by…I just want it all to SLOW DOWN, but there’s no way to make that happen.

Of course the frenzy of Christmas shopping, parties, decorating, etc…is making the time go even faster. Tonight, I am declaring that no one leave the house and no one outside our family enter the house….we eat dinner together, at one table, at the same time and after that watch “It’s a Wonderful Life.” No MTV, no CartoonNetwork…no Gameboy, no PlayStation, and NO BICKERING….just a good, wholesome, feel-good movie. Humn, do you think I will be very popular? I think not.

Hoping you all have a great Holiday and a happy and healthy New Year. Merry Christmas!!!!

Love,
Krista

Saturday, July 2, 2005 10:22 AM CDT

Two years 3 months Post Transplant

Happy July 4th!!!

Nothing new to report on the medical front with Matthew. All continues to go well with the exception of another cavity. That’s three now since the transplant and considering he doesn’t have much of a sweet tooth and I brush his teeth, I’m guessing that his treatment is now taking its toll. We have another check up with our main doctor, Dr. Lipton, in a couple of weeks, but hopefully it won’t be too exciting (I think he will need a shot and a blood draw)…yuk..but in the scheme of it all, we are in a good place.

Kathryn, on the other hand, has been our more recent medical challenge. For the last few months (since the end of April), she has been battling something called HSP (Henoch-Schönlein Purpura). Basically, HSP is an auto-immune response caused by an infection…they think. Kate had a stubborn strep infection at the end of March and once that was resolved, the HSP began. She had severe joint pain (arthritis), a nasty looking rash that turned black and blue (vasculitis), and tummy pains so bad she vomited blood countless times and as a result was hospitalized on 3 occasions. All this is being caused by her own immune system. She had to take prednisone for over a month (NOT FUN AT ALL). She is doing much better now, but we need to keep an eye on her and her kidneys as they have also been affected and she needs to be followed by a pediatric nephrologist (kidney dr.) for who knows how long…wait and see…one day at a time…I am getting a little tired of saying that. Please say a prayer for her. Odds are that it will all resolve itself, but I'm not one for odds.

Mike is doing great. Just graduated fifth grade…yikes! September should be interesting, starting middle school. He just finished the Mark Millon Lacrosse camp this past week, so the house was nice and quiet.

Hope everyone has a great summer.

Wednesday, April 6, 2005 10:02 AM CDT

Two Years Post Transplant…

It does feel good to say that. It feels even better to say that the test results have come back ‘Negative’ on the blood work and bone marrow aspirate done a couple of weeks ago. PCR, FISH and cytogenetic tests all normal. No CML detected. The labs here in NY and Seattle confirm. Thank God. Matthew had a really tough time going in for the tests…it seems the further away from routine medical stuff we get, the harder it is for him. I was shocked by his reaction. The doctors had a hard time with getting access to a vein and had to try in a spot other than the one we have always used and Matthew did not like it that he had to be poked twice. The whole ordeal took about 3 minutes, but it felt like 3 hours. He really made it hard for them…kicking, screaming and fighting it every step of the way. Good thing there were 4 of them in the room to assist. And they were very cool about the whole thing, saying, “He doesn’t have to like this” as I apologized for his unwillingness to cooperate. A trip to Toys-R-Us afterward helped to smooth things over and the results were what we prayed for and that’s what matters most. I’m glad we don’t have to go in again until July.

We’d like to thank everyone who sponsored Michael and Matthew for the St. Baldrick’s Day fundraiser benefiting CureSearch National Childhood Cancer Foundation. Because of your generosity, not only are Michael and Matthew the top fundraisers for our location, raising almost $6,000, but the boys and the rest of their team (the Shiny Scalps) were honored by the Huntington Town Board with a Certificate of Recognition. One Councilman from Huntington also participated in the fundraiser and was so impressed by the “generous feat” of the team collecting over $10,000 and having their heads shaved, that he wanted to recognize them. He wrote a letter to our school’s principal and said, “I’m sure their peers, friends and family are very proud of their efforts in helping to find a cure for childhood cancer.” It is so true.

But more important than the recognition is the difference these kids and everyone who participated have made. The CureSearch organization focuses their attention on the medicine and research aspects of pediatric cancers. Stopping kids from dying from cancer is the priority and this organization will make that happen…someday. Tax deductible donations are still being accepted.

http://www.stbaldricks.org/ShaveePhoto.asp?SolNumber=15320908

Everything else is going well for us. Looking forward to some warmer weather and sunshine. Kate’s starting soccer and the boys are doing lacrosse. School’s winding down and everyone is looking forward to a less hectic schedule for the summer.

Hoping all is well with you and thanks for checking in on us.

Mark & Krista

Thursday, March 3, 2005 12:21 AM CST

Month 23

All is good here...no news is good news. Matthew had an appointment in January that was thankfully uneventful. His blood counts all looked nice and normal...boy, it has taken a while for that...I am happy that they have stayed stable over the last several tests. We'll be doing a bone marrow aspirate (BMA) later this month and will be forwarding on some blood samples to Seattle for molecular testing. We have decided to do the annual test here in NY...mainly, because we are not dealing with any medical problems and everything that can be done there, can be done here. We are so grateful for being in this position at this point...but we are still accepting prayers for Matthew's continued remission. The BMA will confirm.

Other than that, we have been keeping busy with the snow...we went skiing last week and that was fun (see updated pics.)

Matthew and Michael are getting ready to help raise some money for CureSearch National Childhood Cancer Foundation. The event is called St. Baldrick's Day and all the participants will be shaving their heads for donations to the foundation.

Soon, it will be two years since Matt's transplant and I am reminded of what life was like as I look through the 80 or so pictures taken from March to June 2003 in the "Seattle Photos" album at the link below. As we approach the anniversary date of March 23, we are particularly committed to this cause. Without the funding provided by events like St. Baldrick’s Day, answers to important questions like, “What treatment option will give my child the best chance for a cure AND allow for a good quality of life?” wouldn’t be able to be answered. Matthew continues to amaze us and his recovery is truly a miracle. We only wish that all children diagnosed with cancer could end up cured or undetectable as they now say.

Forty-six children are diagnosed every day. Over the last twenty-five years, the incidence of childhood cancer has increased every year. Forty years ago, childhood cancer was almost always fatal. Today, through the advancements in diagnosis and treatment, 77 percent of the children with cancer can now be cured. Despite this remarkable progress in research and treatment, cancer remains the leading cause of death by disease in children.

CureSearch National Childhood Cancer Foundation is the primary beneficiary of St. Baldrick’s efforts. CureSearch NCCF proudly supports the work of CureSearch Children’s Oncology Group, a network of physicians, nurses and scientists who conduct clinical trials in childhood cancer and perform cutting-edge research at more than 200 member institutions, representing every pediatric cancer program in North America, treating over 90 percent of children with cancer in North America. As a result of CureSearch COG’s collaborative research effort, the cancer death rate has dropped more dramatically for children than for any other age group and has directly led to significant increases in cure rates for childhood cancer. Through increased research and funding, CureSearch can reach the day when every child with cancer can be guaranteed a cure.

You can help. Copy and paste the following link and make a donation in Michael and Matthew’s name.

http://www.stbaldricks.org/ShaveePhoto.asp?SolNumber=15320908

We are proud to be a part of this important worldwide event. Last year, our location here on Long Island (Napper Tandy’s) was number one, in terms of the number of people who came out to get their heads shaved and number two in terms of the money raised. Matthew is one of the children being honored at the event here in Northport and we hope that helps in making 2005 another successful year.

Thanks for your support.

Love,
Krista

P.S. Come back for an update early in April for news on Matt's test results.

December 21, 2004

Month 21

Two years ago today, my world felt like it was falling apart. I took Matthew to the doctor because he’d had a fever earlier in the week and complained of a sore throat. He also seemed unusually tired. Walking home from school, he complained he needed to take a rest, sitting down on the stone wall in front of our neighbor’s house. When I brought him to the doctor the next day, I suspected strep throat…and I was right…but when I talked about him seeming so tired and not having much of an appetite, the nurse in the office went just a little further in her exam of him. She noticed that his spleen was enlarged while she was pressing on his abdomen. The doctor confirmed and thought “mono”…seemed logical…that would explain him being tired. So off to the lab for blood work to confirm…no big deal…he’d call later in the day with the results. The rest of the day was spent running errands and doing last minute Christmas shopping. I was mildly worried, but never in my wildest dreams (nightmare is more like it) did I think we would get a phone call later that night from the doctor telling us he thought Matthew had Leukemia. Having the wind knocked out of you…that’s what it felt like on the other end of the phone line…but without falling down.

You see, even two years later, I can remember every minute of that day. I guess deep down, I was a little more worried than I wanted to believe. It’s impossible not to think about what has happened since then. Every day, it crosses my mind…but during this time of year, it hangs around a little longer, before the hectic day sweeps it away. I guess I don’t want to really forget about it. Maybe, it’s just that I don’t want to forget about how much I have learned since then…

Like how important it is to not take for granted how much I really love my kids and Mark…I mean REALLY love them…

Like how necessary it is to say something to someone who is facing a loss or tragedy, just so long as you say something…

Like how incredible people can truly be…people that are quite ordinary who do extraordinary things…

And mostly, like how lucky you can feel, at such an incredibly unlucky time…after all, the odds were with us… only one in a million kids (no kidding) get the Leukemia diagnosis Matthew got and even fewer move onto something as risky as a bone marrow transplant…looking back, blessed is a better word than lucky.

So, as you are no doubt scurrying about, feeling the very real pressures of the holiday season and a long ‘to do’ list that only seems to get longer and not shorter, take the time to soak up the love your children and family and friends have for you. Thank God for what you have…and do something nice for someone that you don’t know…like giving blood. This is a tough time of year, as most blood drives take place in the fall and the spring…so go down to your local donor center and give up an hour of battling the crowds at the mall to make a real difference in the life of someone who needs it. And if you would, consider signing up to be a bone marrow donor. This is such a simple thing to do…and I promise you, there are people out there, today, who are waiting and hoping and praying for a match so their life can be saved. They are at the end of their options, waiting for the phone to ring so they may hope again and you might be able to save their life. I can almost imagine what that must feel like. Here is a link for more information on this topic: www.marrow.org.

Thankfully, for us, there isn’t much to talk about on the medical front at this time. We have an appointment later in January and then late in March, we’ll address what big tests are necessary as we mark the two year anniversary of the transplant. So far, so good. We pray for his continued remission and are thankful for dodging many of the late-effect bullets that so many people face, after the transplant. There isn’t anything else we could ask for.

The kids are all doing really great. Mike is playing basketball and lacrosse and Matt is playing basketball. Those two activities keep us busy on the weekends, but it is SO FUN to watch them as they get older…they just keep getting better and better. Kate is busy playing Barbie’s, decorating the house with her artwork and is always looking for a play date. Lucky we don’t have to look too far…there is always someone around. School is going well for the kids…especially me! How I ever worked is beyond me.

Have a wonderful Christmas and a Happy & Healthy New Year!

Love, Krista

Tuesday, November 9, 2004 8:13 AM CST

Great news on Matthew's last round of tests...no sign of disease. This is the molecular testing we do every 6 mos. to see of there is any evidence of the CML using DNA...None...Zero...Zed! Thank God.

We sent the samples to Seattle and here in NY, just to be sure. At his last appointment he had to get the last of his immunizations, a flu shot, and give a bunch of blood for all these tests...but as usual, he was a trooper and got through it with minimal trauma. His counts are finally hitting a normal range...it's all so reassuring.

Everything else is going well. This weekend, Michael made a trip to the ER for stiches (his first...pretty good considering he is 10) he needed after running into a fence gate (don't ask) and Kathryn got her first trophy for soccer! She was very excited. I missed all of the excitement because I went to visit my friend Lois in Ohio. Her husband flew a few of her close friends out to surprise her for her birthday. The move from Northport to Columbus has been emotional, and it was good to be able to see her and cheer her up. We had fun shopping and dining...but it was good to get home. I really still get nervous leaving the kids, but they were nicer to me for about 3 hours...then, back to normal...just the way I like it.

Krista

Monday, September 27, 2004 9:34 PM CDT

Month 18

Happy autumn. Things are chugging right along. The boys are back in school (Michael grade 5 and Matthew grade 3) and Kathryn is going to pre-school 5 days/week for a few hours. The transition for everybody, so far, has been smooth and we’re hoping it stays the course.

Both boys are really psyched about their teachers and after meeting them at open house the other night, I can see why. Michael’s teacher is about as cool as you could imagine. First off, he’s a man, so that’s something new…second of all, it’s evident he loves his job and I’m sure that comes through in his teaching. He’s a lifeguard (at the Ocean beaches)…way cool, and he makes learning so fun, I can tell Michael is going to have his best year ever, which is just the way 5th grade should be! Matthew likes his teacher a lot…she is sweet and kind and he seems to be comfortable with his classmates and the whole classroom scene. So far, no tears over homework, no “I don’t want to go to school today” and no calls from the teacher…It doesn’t get any better than that!

Kate really likes going to school. She is attending a catholic pre-school (and let me tell you, she needs it)! We can tell that she is benefiting from the structure. She likes being able to say the Pledge of Allegiance and blessing herself. She goes around the house singing all sorts of cute little songs that she is learning and her teacher’s one and only comment so far has been “you can tell Kathryn has two older brothers.” I CAN wait for her parent teacher conference, that’s for sure.

Another big event has been our dear friends, the McCourt’s, leaving Northport and moving to Columbus, Ohio. We all really miss them. The block seems a bit quieter without them and the people who bought their house have not moved in, so seeing it sitting empty is a little sad. The boys are doing okay about the whole thing, but they miss Tyler and Andrew.

Medically, things are going well. No news is good news. Matthew goes in for an appointment later in October and at that time, we will repeat the molecular testing (PCR) that is used to detect the CML…pray for the word “UNDETECTABLE”...that is what we want to hear. We’ll have our hospital here do the test and we’ll have a sample sent to Seattle as well. Can’t be too sure. He has continued to grow…but we’re still working on the weight thing…although, he is well proportioned…I just get nervous when I don’t see any gain for months at a time…maybe now with the warm months behind us, he won’t burn as many calories and maybe will put on a few pounds.

Kathryn and Michael are doing great…Kate grew 4 inches last year…she is pretty tall…and so far my only child to reach that “95th percentile” for height and weight…it makes her seem older than she is. She has grown way too fast. Michael grew almost 3 inches and has stayed healthy since….well, I can’t really remember when he was last sick. Hopefully that kick-butt immune system he has is doing its thing in Matty and all the time I spend worrying about the “R” word is a big waste of time.

Mark and I are doing fine also. He's working. I'm not...still waiting to hear if there is a small role for me at Arrow, but with all the changes the company has seen this last year and a half, I don't hold out a lot of hope something will come about. To tell you the truth, as much of me doesn't want to work as does want to...que sera, sera.

Be Well,

Krista

Monday, September 27, 2004 9:34 PM CDT

Wednesday, July 28, 2004 3:34 PM CDT

Day +???

I think it’s time to move to months…

Month +16

It’s hard to believe we are half way through the summer. Everything is going well for us all. The picture above is from Matthew’s 8th birthday party. We were in Disney for his actual birthday on June 3rd, having a great time OD’ing on hotdogs and ice cream and having fun at Blizzard Beach, Magic Kingdom, Animal Kingdom, etc….All Disney – All the time. We really did have fun. The best part about being there was being able to be there. Everything went perfectly, thanks to Make-a-Wish. We didn’t have to do one thing except show up outside for our pick up to the airport. The foundation grants wishes for all kids who face life-threatening illnesses. Matthew’s wish was to go to Disney and stay at the Wilderness Lodge, where we had stayed once before a few years ago. Aside from the crowds, heat, and heat...did I mention it was hot…we had a great time. I must say, the thrill of entering Magic Kingdom…walking down Main St. USA…and departing Magic Kingdom, after the INCREDIBLE fireworks over Cinderella’s Castle makes for unforgettable memories. Too bad my digital camera got wet…my photos from the trip are a little light.

Since then, I have replaced the camera and have included some new photos of the kids just hanging out at the pool with their friends in the neighborhood. They are having a ball and even though a pool full of their friends can get a little…uh…stressful?...it’s all goodness.

The boys are doing basketball camp this week…but for the most part, are just enjoying a lot of free time with their friends. Kate is learning to swim, and can’t get enough of the pool.

Matthew has a doctor appt. in a couple of weeks…but as far as I can tell, is doing great, doing everything a kid his age should be able to do! What more can we ask for? For us, nothing…But for so many others, we have a request…How about your blood? Did you know that the shortage this summer has supplies at an all time low? Please consider donating. If you are reading this, and live in the NY area, check out www.nybloodcenter.org and click on ‘Blood Donation Info & Blood Facts’ for locations you can visit to donate. If you give because you read this and follow Matthew’s progress, then maybe, there is some sense to all of what he has gone through. Please donate and make a difference.

Love,
Krista

Wednesday, June 16, 2004 8:24 AM CDT

this is a test

Monday, May 3, 2004 8:06 AM CDT

Day 405

The results from our trip to Seattle for Matt’s one-year post-transplant check-up are all GOOD! Thank GOD.

It was a long week. We were welcomed back to Seattle by the Marriott Residence Inn on Lake Union with a big banner and lots of goodies in the room for us to snack on, which was a good thing, considering how late it was Sunday night when we arrived and that no food was served on the plane ride west. The appointments started Monday morning. Throughout the week he had his eyes, lungs, bones, mouth, teeth…and most important blood and marrow checked. All good.

There were three highlights of the trip. First was having to be admitted to Children’s Hospital for a growth hormone study. In plain English, it sucked. The purpose of the study was to evaluate the level of growth hormone in Matty’s blood. To do that blood is drawn every 20 minutes for 12 hours…it worked out to 39 blood draws. He had to get two IV’s for this. One used for the draws and one for back up in case the first one crapped out. Of course it did, and of course the back up didn’t work either and we had to race down to the ER to get a third put in. The urgency is the schedule and the fact that if more than one draw is missed, the whole study has to be scrapped. Not good, considering the IV’s stopped working at the very end of the 12-hour period! Then, as if being bled out all night wasn’t bad enough; he couldn’t eat or drink anything all morning until after the bone marrow biopsy/aspirate was done at noon, due to sedation. It was rough on him, but it was over and done with in 24 hours and he felt fine after he got to eat/drink something. Next time, we’ll know better and insist on a different schedule. It was good to see a lot of the nurses we had come to know (especially you Mara) and best of all, we got a really good room with lots of space and it’s own full bath!!! Bottom line, the study showed a lower than average level of growth hormone when unstimulated, though when stimulated by medication, the levels were normal…given the fact that he grew almost 3 inches last year and is still on the same growth curve as before transplant, we are not going to do anything this year in terms of growth hormone injections. We’ll sit tight and check again next year, but it is likely he will need therapy.

The second highlight of the trip was Matt getting reimmunized…5 shots in all. He was NOT a happy camper about this. But, again, it’s over and done with and besides a sore leg and fever, he was none the worse for it.

Lastly, meeting with Dr. Sanders and hearing that the results were all good was the best part of the trip…especially when she said, “It’s time to treat him like a normal boy!” Wow, who could ask for more? Not us.

Since our return home, and getting the results from the bone marrow, our good luck streak has continued. No sign of Leukemia anywhere. The molecular studies all came back undetectable for CML from the blood and the marrow. His cells are all Michael’s cells, which is good. No GVH issues at all. He is back at school, adjusting very well and very happy to be back into a more normal routine. He is having a ball with all his friends; playing baseball and lacrosse and doing everything a normal kid can do, without limitation. He made his Communion this past weekend and while he was not excited about the suit, he got over it once he started opening his gifts. I wish he was able to understand this day just a little bit better, but given what he has gone through, I’m inclined to cut him some slack and let him bask in the glory of tallying up the envelopes.

The only snafu has been a BIG cavity in his 6-year molar. It’s filled but it was real close to the nerve and root canal at a later date is a strong possibility. Let’s hope not. Now you may be thinking, after everything this kid has endured, medically, a cavity is no big deal…. but I assure you, he is smarter now, and gets it. Any pain whatsoever is a BIG deal. But, as usual, he got though it thanks to an excellent pediatric dentist, a little sweet air and A LOT of Novocaine! Michael came along to the appointment for moral support, giving up a sunny afternoon of water gun fights at the McCourt’s with all his buddies in the neighborhood. He is such a good brother, although, I wasn’t thinking that last night when he threw a pencil at Matthew’s face for no good reason!

The rest of us are doing fine. Enjoying the spring weather and being normal. I’ll update again in another month or so…let us know if you still checking in and sign the guestbook. It’s great to know who is still visiting. And don’t’ forget to say a prayer for all the other kids, just like Matthew, whose path to recovery hasn’t been as successful. We feel so blessed.

Love and Thanks,
Mark & Krista

Wednesday, March 24, 2004 8:30 AM CST

Day 365!!!!!

I would have given everything one year ago to be where we are today. The picture above was taken exactly one year ago while Matthew was receiving Michael’s stem cells. I think Michael looks worse than Matthew does (and who is that clown?) The sedation really made him feel ill for a few hours but within a day or two he was back to normal. Matthew’s recovery, on the other hand, has taken much more time. But so far, things continue to be positive in all ways.

We went to the clinic yesterday for our check up and his counts all look stable (WBC - 4,040, ANC – 1,740, PLT - 155,000, HCT – 33.6, and HGB – 12.3). The results from his immune function tests were improved from last time and Dr. Lipton said “Let’s get him back to school!” Since we are just a week or so away from our trip to Seattle, we are going to wait until we get back. Hopefully, the Doctors’ there will agree with our doctor here in NY and Matthew can get back to the second grade. In the meantime, he is playing basketball, getting lots of visits from the tooth fairy (when she remembers….the late charges are costing a fortune), and preparing for his First Communion.

We are so proud of Matthew. He has done what we have asked of him and his progress is truly miraculous. Since just before the transplant he has grown almost 3 inches and has put on over 10 lbs. He is pretty average in terms of his body height/weight. His counts are still low-ish, but continue to slowly trend upward where they need to be. The best is that he has stayed healthy this past year, with no real sickness to speak of. So, even though his counts are low, they are doing what they need to do to protect him. Let’s hope that remains once he is back in school (oh yeah, have you washed your hands in the last 5 minutes?)

We’ll be in Seattle for his one-year check up the week of April 5. The biggie will be the bone marrow aspirate and the molecular testing. We are praying it will come back “Undetectable” for the BCR-ABL gene. The last time we did this test was in October and there was no sign of the Leukemia…let’s just hope his new immune system has had the where-with-all to continue to fight off those residual nasty cells. Maybe (now, this is Dr. Mom talking), because it hasn’t been tied up fighting off a lot of colds and other infections, it has been able to focus all its attention on zapping the last of the Leukemia…

As for the rest of us, we are all doing fine. Michael is doing great. Having fun in school…playing Spring Lacrosse and just finished Indoor Lacrosse and Basketball (his team finished second in the league). Aside from some skiing in February, the highlight was receiving the "Cub Scount of the Year Award" from his Pack here in Northport. The plaque says "For Bravery And Performing A Meritorius Act That Saved the Life Of Another Person." Pretty cool. Kate is taking dance (ballet and tap) with her friend Mary. Now, if she would just stop talking and listen to her teacher, she might just learn the steps! Mark is doing well, after a bout with pneumonia that really knocked him for a loop for a couple of weeks. He still managed to go through with raising over $3,000 for the National Childhood Cancer Foundation (NCCF) during their annual “St. Baldrick’s Day” fundraiser by shaving his head. I am so proud of the people in our community and all the generous donors who helped to make this event so successful. NCCF is important because it supports the work of the Children’s Oncology Group (COG) which is a network of physicians, nurses and scientists who conduct clinical trials in childhood cancer and perform cutting-edge research at more than 200 member institutions, representing every pediatric cancer program in North America, treating over 90 percent of children with cancer in North America. In plain English, when parents are faced with the overwhelming decisions regarding treatment choices for their kids, the most important thing they need to know is what option will work the best. Thanks to the collaborative research efforts of COG, that information is available. Mark and I could not have made good decisions about Matthew’s care without the work of this group. Check out more on this and see Mark’s progress page at http://2004.stbaldricks.org/ShaveePhoto.asp?SolNumber=15312221

As for me, I’m just sailing the domestic ship for now and looking forward to retiring from my home schooling career soon. On a seperate note, I am pretty proud of myself, as I gave blood last night WITHOUT fainting. The boy’s school had their spring drive and we collected a record number of pints. I helped out organizing the drive, but really wanted to do the one thing that no one else can do for me, which is give. Some of my co-workers at Arrow might remember that I have had 2 bad experiences with that in the past years. But I figured, if all these kids can get poked with needles over and over again, what is my problem? It felt really good to know that my one pint can make such a difference. So, if you don’t already give, GIVE!!! And if you won’t give for all these cute kids who in some cases need multiple transfusions per day, give for yourself…you will feel good afterward!

I'd like to share an excerpt with you from an on-line journal of a little girl named Kendrie. She is fighting Leukemia and her mom writes: "My hero is the anonymous person who donated blood in the Atlanta area sometime in the past 45 days. Kendrie’s count results from yesterday showed all of her counts dropped (as expected) and her hemoglobin dropped below the cut-off number for transfusion. So today we went up to the clinic so she could have the blood transfusion she needed to get her numbers back up to a safe level. Hemoglobin carries oxygen, and it was obvious by looking at her she didn’t have enough ….. pale complexion, pale lips, lots of naps. Three hours later, viola! Pink cheeks and energy to spare.

So who was this person who gave my daughter the gift of life today? I’ll never know. Our family is not allowed to direct donate to Kendrie in the event she might (God forbid) need a bone marrow transplant at some point in the future. If she were to receive blood from one of us, that would make that person ineligible to donate bone marrow to her if she were to relapse and need it. Of course family would be her best hope for a bone marrow match, so we can’t take ourselves out of the running like that (at least that is how it has been explained to me.)

So we depend on the kindness of strangers who are willing to donate blood for someone they don’t know. Someone who took an hour or two out of their schedule to give the precious gift of a blood or plasma or platelet donation. Someone who perhaps gave up a long lunch with friends and instead ate a sandwich at the donor center while donating. Someone who gave up a few hours at the gym, or the mall, or in front of their tv relaxing, so they could make a difference in the life of someone who needed help. Today that someone was my daughter and I am eternally grateful."

I couldn't have said it better myself.

Love,
Mark & Krista

Wednesday, February 11, 2004 1:01 PM CST

Day 324

All continues to go well for us. Matthew has managed to stay healthy even with a ‘lowish’ white blood count. We go to Schneider once a month for bloodwork and an exam. For any of you out there in ‘counts’ land, his last CBC was: WBC 3800, ANC 1752, PLT 171000, HBG 12.6 and HCT 34.6. The platelets are the only thing in normal range, but the others are all so close….patience is a virtue. Dr. Lipton says that Matt is “pretty perfect” and there isn’t anything else we can ask for. We are planning our one-year check up to Seattle for the first week in April. Aside from more molecular testing looking for relapse, they will be checking for late effects from the transplant (growth, sight, dental, etc… issues). We are all going to go and try to make it as fun as possible. In the meantime, we are watching Matt’s immune system closely and hoping this last batch of tests will show improvement and strengthening since the tests done a couple of months ago. We are all looking forward to getting the green light from the doctors here in NY and in Seattle for Matt to return to school. It’s hard to believe he has been out of school for an entire year. But most of all we are anxious to get a clean bill of health, with no signs of leukemia or major complications.

It really is such a big deal to be at this point, having experienced so few real complications. It’s all relative I guess. Compared to a ‘normal’ kid, Matt has been through so much…but compared to so many other kids going through a transplant or fighting cancer, he has done so well. I don’t know why it is this way. I try to remember something someone once told me, and that is to not borrow other peoples’ problems….but I can’t help think about the many children going through these horrible illnesses…please include them all in your prayers and keep things in perspective when the stresses of your own family life get to you.

We are still taking it easy, but taking small steps towards a more normal (exposed) routine. Matt started a basketball clinic once a week, for one hour. Mark took him and said he really did well and had a great time. Matt can play with anyone, as long as they are not sick, and has fun with his buddies in the neighborhood. We never have to look too hard for a play date! This week, we are hoping to visit his class for a Valentine's party. I really think he will do just fine with the transition back to school.

So keep the prayers coming. It sure will feel good to pass the one-year mark and get the results that we hope for from Seattle!

Thankfully,
Krista & Mark

Tuesday, December 9, 2003 7:47 AM CST

Day 260

Wow…I’m sorry it’s taken so long to update those of you who are still checking in. Thanks for not giving up on us, but the good news is, there isn’t a whole lot to report on. Matthew is continuing to do very well on all fronts. We have our monthly appointment this week. Last appointment, his blood counts were all moving closer to normal, though still a little on the low side (WBC 3810, HCT 36.5, ANC 2005, PLT 156000). We took a lot of extra blood to check out how well his immune system is recovering in order to make a decision about going back to school. We’ll get the word on that this week, but I suspect he isn’t quite there yet. This really would be a lousy time to go back to school. Seems lots of kids are out sick with all sorts of respiratory ailments…and the reports of this nasty flu season are enough to scare even parents of perfectly healthy kids. We will probably not send him back just yet and wait until his counts are all normal, his immune system is 100 percent and the worst of the sick winter months are behind us.

We made our appointment for Matt’s one-year check up in Seattle. We’ll be headed back the first week in April, with the hopes of making it back in time for Easter. There will be lots of tests, but nothing will require being admitted to the hospital. We will be praying for continued remission and a strong recovery from the transplant itself. They will look at things like growth rates, dental, vision, neurological, and many other areas to see what has been impacted. Many times, the effects are late in presenting themselves, so we will be at this for a long time…but have so much to be grateful for as we watch him act like a normal kid each day.

It was almost one year ago that we found out Matthew had Leukemia. It is numbing to think about how much has happened since then. Believe me when I say, we are so very lucky to be where we are. Aside from going to school and being around big crowds indoors or sick people, Matthew is able to do just about everything he used to do before he was diagnosed. He takes a multivitamin each day and that is it. He can go sleigh riding, when it snows (check out the new photos) and ride his bike or roller blade when it doesn’t. He plans on playing baseball in the spring and would like to sign up for Karate as soon as possible. All this goodness, while most families that we met in Seattle are still struggling with slower recoveries and much greater restrictions for their kids. One family that we met just lost their son. They were from New York also (Manhattan) and their son was hospitalized for almost a year and a half during his two unsuccessful transplants. He died on the first of December and has moved to a better place. I can not imagine what it must be like for his parents. They were incredibly dedicated and never left his side during what must have seemed like a lifetime those 18 months. He was six years old.

If you have kids in your family, go give them a tight hug and when they add to your holiday stress, just remember what is really important…drop everything and show them the patience, love and attention they need and deserve. You’ll feel better too…I promise.

P.S. Thanks to all my co-workers at Arrow Electronics who donated almost $4,000 to Caringbridge. We continue to be thankful for the incredible generosity of so many people in our lives. Happy Holidays!!!

Monday, October 20, 2003 8:37 PM CDT

Day 210 (updated day 211)

All continues to go well for us. Matt is getting his blood tests once a month now. His last was about 2 weeks ago and his counts, though still not normal, continue to move in the right direction (WBC 3200, ANC 1720, PLT 185000, HCT 34.8). We had some extra blood drawn and sent to Seattle for molecular studies. Of course we are hoping the disease is “undetectable” but the next best thing would be a show of declining leukemic cells…the worse, relapse. In CML, there are different levels of remission. Hematologic remission (meaning blood, we got that), Cytogenetic remission (meaning chromosomal, last we checked, we got that too) and finally Molecular remission (meaning DNA, we haven’t gotten that yet). In transplanted CML patients like Matt, 40 percent of those that did not achieve a molecular remission 6 months post-transplant, relapsed. The doctors in Seattle and here in NY should have the results sometime this week. I guess you could say we are a little on edge…but we are trying to keep things in perspective. We have a number of options to consider in terms of continuing treatment if in fact the results are not what we hope for, and that’s better than many other diseases. (****Update 10/21**** Just got a call from Seattle and Matty's BCR/ABL test is "undetectable" or "negative"!!!! This is great...no AWESOME news! He is now in molecular remission. We will check again in 6 months to make sure he continues to hold this level of being disease free. THANK YOU GOD, THANK YOU MICHAEL, AND THANK ALL OF YOU FOR THE PRAYERS!)

In the meantime, Matt is doing well on all fronts. He is off all medications except for a drug that he gets once a month (via IV, pentamadine) when he goes for blood work. Still being home schooled (if you can call it that) by me and thankfully, getting one hour each day with his assigned teacher. His appetite is great and he continues to steadily (but slowly) gain weight (now up to 52 lbs…considering he was 46 lbs when diagnosed 10 months ago and went through a transplant, I’d have to say that’s pretty darn good.) Michael is busy with lots of activities at school and playing flag football. He has a great team and great coach, and is really enjoying learning so much about the game….speaking of games, how about those Yankees (sorry Boston pals)!

And then there is Kate…as I always say, she is a piece of work. One minute she is so good, the next, so bad. Good thing she is cute and funny…though that didn’t impress her gymnastics teacher who, gently, suggested that perhaps we should wait and enroll her at a later time. Can you imagine, getting kicked out of a gymnastics class!!! Frankly, the class was a little overcrowded and Kate does not enjoy waiting in line to use the balance beam…she would much rather be playing with all the cool stuff and running around the big gym. I don’t blame her…I’m sure I can find something better for her that costs a whole lot less and is more fun for her, after all, she is only three.

I’ll update the site again once we have the results of tests and know how we are going to proceed. Keep those thought and prayers coming…we still need them.

Love,
Mark & Krista

Sunday, September 7, 2003 10:05 PM CDT

Day 167

Hi everyone...I'll get right to it...Matt is doing great. He had a wonderful Summer and is off to a good start to an even better Fall. His bloodwork shows continued improvement in getting close to normal blood counts. The latest is WBC 3,000 / Platelets 138,000 / Hematocrit 35.1. The big improvement is in his red cells. We have discontinued using the drug Dapsone and replaced it with something called Pentamedine. The good news is the Pentamedine is given via an IV only once a month and it seems to have alleviated the hemolysis he was experiencing on the Dapsone. It seems more than coincedental that as soon as he stopped the Dapsone, his red cells began to improve. We could tell a difference not only in his energy level, but also by the added “pink” in his cheeks, peeking through all those freckles! His appetite is great and his latest favorite thing is scrambled eggs with cheese. I think he has eaten this everyday for the last 3 weeks! Good for him and his weight which has steadily increased since we returned from Seattle. He finally broke 50 lbs.!!! We keep praying that all of this good stuff will continue, and in the meantime enjoy watching him be (basically) a normal kid, aside from the restrictions (i.e. no crowds, no being around anyone sick or who thinks they might be getting sick, no school, etc…)

Now that school has started, Matt is lucky enough to have his assigned second grade teacher also be his home tutor. Mrs. Farrell comes each day, after school, for one hour and so far, so good. Michael is enjoying fourth grade with his teacher and great class. He starts flag football this week and his second year of Scouts. So far, Matt has wanted to walk or bike with Michael to school each morning. It’s good because he gets moving in the morning and gets to wave hello to his buddies. We are not exactly sure when Matt can return to school, but we are hoping maybe by year-end. It will depend on some tests to determine his immune strength. He has stayed healthy since we got home from Seattle and with his counts improving, we hope that will continue.

It’s hard to believe the summer has ended. We took a trip to Montauk this weekend. It’s an annual thing. Mark bikes out ( about 80 miles) with some friends and we all meet at the end of the ride. I think this is the fifth year we have done this and it just gets better each year. The weather was fantastic. The surf was incredible due to hurricane “Fabian”. The kids had fun just playing on the beach and enjoying the good weather and good company. We can’t wait to do it again next year, but with less restrictions for Matt.

The next medical milestone is on September 24th. On that day, it will be six months since the transplant. Half way to the one year mark!!! We are so grateful for how far Matthew has come and for all of you who prayed so hard for us and gave so much to our family. Thank you….Thank you….Thank you!!!

Love,
Mark & Krista

Thursday, July 24, 2003 9:04 AM CDT

Day 122

We made it home!!!

Sorry this update is long overdue, but it’s been a little hectic these past few weeks and I must admit, we are enjoying a more “normal” routine that allows us to forget about the transplant from time to time. We plan to keep the site up and post updates about once a month, so check back in with us toward the end of August.

Matt is doing really well. He is getting blood tests weekly at Schneider Children’s Hospital here on Long Island. Depending on traffic, it can take up to 1 & ½ hours each way…add in at least a 2 hour wait and most of the day is shot…this is a far cry from our experience in Seattle, where we only had to walk about one block to the clinic and never needed more than 1 hour for a visit…good thing we only have to do this once a week. And next month, maybe every other week if things continue to stay on track.

Matt’s counts are holding steady…His platelets continue to improve nicely (up to 157,000) and his WBC has been bouncing around in the 2,500 – 3,000 range. We are hoping his red cells have hit bottom and that they will hold or begin to increase. All in all, he is doing great. His energy level is improving as is his stamina and endurance. Swimming in our pool is great for him. He enjoys it so very much. His appetite is GREAT!!! He really seems to enjoy it when he eats and doesn’t need us to badger him nearly as much as before. We couldn’t ask for more.

Michael is finishing up summer school. This is his last week. His third grade teacher has taught the summer session, in the very classroom that Michael left…He has really enjoyed it and believe it or not, is disappointed that it is ending. Next week he goes to Lacrosse Camp for a week, which I know he will love. Matt can’t really do much beyond play with a few of his close (healthy) buddies…but that suits him just fine for now. He won’t be able to go back to school for a while yet, maybe around the holidays, but we will make sure he gets to visit his class and attend some of the fun activities when things get started in the fall, so that he doesn’t feel too left out. Kate is doing great….she’s happy to be home too, getting reacquainted with all her toys and friends on the block. She has spent the week with Nana & Pops upstate, and we have finally been able to fully unpack and get things organized (well, almost). We get to get her back tomorrow.

We had such a special greeting from all of our friends and family when we got home. The driveway was decorated with so many balloons, banners and the origami cranes made by the boys’ schoolmates. Coming home to that, along with our closest neighbors’ personal welcome was very emotional. Each day I think of how lucky we are to have such a wonderful family and community who took care of us in so many different ways. From organizing the benefit to moving the cars in the driveway to make it look like the house was lived in, no job was ever too big or too small. Saying thank you seems so inadequate.

Mark & I had forgotten what it’s like to take care of a home, yard, pool, not to mention go to work, while we were in Seattle. As much as we missed everyone, not having the pressures that go along with living home allowed us to concentrate fully on Matt and his care during an intense time. Now, he is only on a couple of medications, weekly blood draws, no central line, and eating so much better. It wasn’t that long ago that all these things consumed at least 6 hours each day...very high maintenance! We are so proud of the progress he has made and so very grateful for where we are today.

Thursday, June 26, 2003 2:28 AM CDT

Day 93 (Wednesday, 6/25)

On Monday, June 30th, we’ll all be singing “So long Seattle”!!

As our long awaited departure date gets closer, we continue to take it easy and do everything in our power to not rock the boat. We had our discharge conference yesterday and to sum it up, Matt has done really well…so far. He has tolerated the transplant very well with no signs of graft vs. host disease…at this point. It is still possible (10-15 percent chance) that it could rear its ugly head, but if we can make it to the 1 year mark with no signs, it is extremely unlikely we would have to worry much about it from there on out. He has good strong bones, good oral health, good eyes, average lung capacity, and his height and weight puts him in the 25th – 50th percentile. His marrow is healthy and normal with virtually 100 percent donor (big bro) cells. His blood counts are far from normal, however, (a little “wimpy” they say) but they are holding their own and improving little by little.

In terms of his latest counts (normal for children noted in [ ] ):

WBC – 2,490 [5,000 – 10,000]
White Blood Cells – Total count of all types of white blood cells whose job is to fight infection.

ANC – 1,130 [1,500 – 7,500]
Absolute Neutrophil Count – Measure of the body’s ability to fight infection.

HCT – 27 [34 – 40]
Hematocrit – Measure of red cells ability to transport oxygen in the blood. When this is low, you have less energy and feel tired.

PLT – 112,000 [160,000 – 500,000]
Platelets – Necessary to repair the body and to stop bleeding.

All of these measurements were much, much worse when we were initially in the hospital and have steadily improved, albeit, slowly. Hopefully getting home and the lazy summer days will aid in his blood counts’ further recovery.

Speaking of blood…A big thank you to all you blood donors out there. Matthew has received 12 transfusions during his stay in Seattle…6 platelets and 6 red blood cells. In the scheme of Leukemia and kids, this is not very much at all. I’m hoping this week’s red cell transfusion was his last. PLEASE CONSIDER DONATING BLOOD IF YOU DON’T ALREADY. Without the generosity of so many strangers, Matthew could not have been supported. We asked if we could donate for him, but it presented a number of complications. So donate for someone you don’t know, in the name of someone you do know…Matt.

As for the CML, he has no evidence of disease; however, he does still show positive for the gene abnormality (known as BCRABL) that causes the CML. This testing is at a molecular level and we’ll need to watch it closely these next few months. We are lucky that they have this technology, as early intervention is key in keeping things under control. Not all cancers can be monitored at this miniscule level…so if it starts to rise or continues to be positive after 6 months post-transplant, we can take one of several actions that will get it under control and hopefully eradicate it. For now, we just want to support his recovery and not overreact. We have been reassured by multiple sources, that this is not an indication of failure, relapse, or future relapse. It is a measurement tool that we need to use wisely to help determine what to do and when to do it….whew.

Enough medical stuff…we finally got to go to Mt. Rainier today. It is about a 3 hour drive (each way) but well worth the trip, even in Seattle traffic. The pictures I took DO NOT do it justice. Even the boys, who were moaning and groaning about the long drive, admitted it was cool to see a volcano up close. It was a beautiful day here and the weather looks to be good for our remaining days. Matt gets his Hickman (Central) Line pulled tomorrow, so that is a VERY good thing. They literally pull it out, and yes, he will be sedated. He will be able to swim in our pool, but no public pools or any natural body of water until 1 year post transplant.

So, that’s it from Seattle. Will let you know when we get settled at 164 Highland Avenue…Home Sweet Home!

Much Love,
Mark & Krista

Tuesday, June 17, 2003 12:02 AM CDT

Day 85

The light at the end of this tunnel is getting brighter…

Today is the last day of testing that Matt has to go through. It’s called a pulmonary function test (PFT…there’s an acronym for everything) and it should be relatively painless, though he will not like it and will say that we are “annoying” him. He has to get into this chamber and do all sorts of breathing exercises (moms, think of Lamaze). Anyway, all has gone well so far with all the procedures. Next week we will have our discharge conference where we review everything. We get to sit down with the team for a couple of hours and go through what has happened and where we go from here. This is not the kind of meeting you bring 3 rowdy kids too, so we are hoping the Child Life Specialist can give us a hand and keep them occupied with a movie or games.

We are hoping to fly home on July 2!! The kids are very excited and we are anxious too. Last night we watched a home video that Mrs. Armbruster (the counselor at Ocean Ave. Elementary) sent of the Lip Sync contest the boys’ schoolmates had. They were so excited to see all their friends that participated. Michael said he “missed that stage” where the kids performed and commented on how tall everyone got! Thank you, Mrs. Armbruster, for thinking of us and sending it along. It made their day. The timing was perfect.

Matt is feeling good. We have continued to have great weather here and make it a point to get outdoors everyday. His counts are still far from normal though. Still hovering, but when you look at them over the last two months, since we got out of the hospital, they have trended upwards. We hope that will continue over the summer. The doctor said to think of Matt as a newborn, in terms of his ability to fight off infections. He will need to be re-immunized after a year past the transplant. Our special challenge is that this “newborn” is in a 7-year-old’s body…that feels pretty good…and is dying to see all his buddies. We will just have to pace things slowly and ask that all of you back home appreciate what we are up against. His new marrow is slowly coming to life and it needs everything to be perfect. ANY illness that he can avoid will allow it to gain strength and do what it needs to do, which is get him normal blood counts and zap any left over cancer cells lurking in his body.

We know he has minimal residual disease (MRD) and in CML patients who have a transplant, that is quite common until the new immune system gets going and can “mop it up”, as they say. During the next several months or so, as things get going stronger, we will monitor this and the hope is that by 6 months post-transplant he will test negative for it. It’s a little complicated…but the doctors’ all reassure us that he is doing fine, that the fact that he tested positive for MRD at his day 56 bone marrow is quite common and NOT an indicator of relapse or increased chance of future relapse…still, I like the word NEGATIVE better. We’ll see what the day 80 marrow looks like next week. I think all of our bodies get cancer cells in them now and again, but for the most part, our immune systems’ kill those cells before they get growing and out of control. Thanks to Michael, Matty has a new immune system…we just have to nurture it while it takes root and grows.

Love,
Mark & Krista

Tuesday, June 10, 2003 0:44 AM CDT

Day 77 (Monday, 6/9)

Hello everyone…another lovely day here in Sunny Seattle comes to an end. It really is unbelievable. I can’t remember the last day it rained here. This weekend was almost too hot and too sunny. We had lots of fun. Our good friends the Hubbard’s came for a visit. Steve, Lynne, Jackie and Eric came out for the weekend and happily escaped the dreary weather back on Long Island. Everyone had a great time bumming around Seattle. We couldn’t take on anything too exciting as we are extremely concerned about not rocking the boat and risking Matthew getting sick. As Mark said “we are on a tightrope and can see the platform.”

Today began our series of “Day 80” work-up tests. Matt will go for all the same tests he did before the transplant. They will evaluate how well he tolerated the transplant, what his marrow looks like (again) and get a baseline for moving forward. It is the beginning of our preparation for being “discharged” from Seattle. We still do not know exactly when we can leave, in terms of a date, but we still believe it will be early in the month of July. We'll let you know when we know.

Matt’s blood counts are holding steady, though today’s labs were down a bit from last weeks’. His last few WBC counts have been between 2,000 – 2,600 and ANC has been 1,000 – 1,500, so we are at least bouncing around at levels that are a little higher. We have also started to taper the dose of the drug (cyclosporine) that has given Matt a new set of brows, not to mention a coat of fine hair all over! This taper is good news. It means that we are confident enough to slowly get him off the drug that is preventing graft vs. host. We still have not seen any signs of the disease yet and will be keeping a watchful eye out for changes as we slowly reduce the amount of the drug. The taper is scheduled to last until early October. This is the nastiest of all the drugs, as it 1) tastes awful, 2) causes hair to grow all over the place, 3) suppresses the very immune system that we hope will fight any CML looking to make a come back. Also, he is doing really well with fluids and food and is now off the IV hydration that he has been on since going into the hospital 3/17/03!! And, if all continues to go well over the next couple of weeks, we hope to get his central line out before we return to NY…that will really be a good thing (sorry Martha)!

Thanks to everyone for the Birthday gifts and cards for Matthew. Some days it feels like ToysRUs here in room 618! We really appreciate all of you who have kept in contact and help us to feel so remembered. It means more than you can know.

Love,
Mark & Krista

Friday, May 30, 2003 10:08 AM CDT

Day 67

Another week down! Hopefully by now, the sun has started to shine back on the east coast. As for Seattle, we have had great weather this last week…lots of sunshine and warm temperatures. We’ve tried to make the most of it by spending time outdoors. The kids have really enjoyed all the parks around here and it’s been good to get out of the apartment.

We had our clinic visit this week and while all the tests on Matty’s bone marrow were not yet complete, those that were, showed good results. All three components of cells (red, white, and platelets) were noted as present and the aspirate was “mildly hypercellular for the patient’s age at 80 This means that there were a good number of cells in the sample, as opposed to too few, in which case it would be “hypocellular”. The other good news is that “there is no morphologically evident malignancy.” No CML!!! We’re still waiting on the balance of the tests, but what we know so far is positive. Thank God.

His last blood test has finally shown a move up with his white blood cells and ANC (neutrophils, the part that helps fight infection). We have been hovering around 800 ANC for about a month now and yesterday’s was at 1,400!!! Before Matt got chemo and radiation, his ANC was 3,900, so we have a ways to go. He is experiencing something called hemolysis as well. It is a premature breakdown of red blood cells. So Mike’s marrow is doing its thing and making the red cells, but Matt’s antibodies are doing their thing and killing them off. It’s a bit of in internal struggle (not unlike two brothers struggling for power) and it will need to resolve itself on its own. It is not severe and it is not unheard of for this to happen. For some patients it doesn’t happen at all. Go figure.

Matt has been feeling a lot better too, since he got a red blood cell transfusion on Wednesday. The red cells carry oxygen throughout your body. When it’s low, you can become anemic and feel very tired. He has also started getting a weekly shot of “Epo” which is a drug that stimulates red blood cell production. He has been getting transfusions of red cells every couple of weeks now, so this may help reduce the frequency. He has had a lot more energy and has managed without power naps since then.

It’s good to see him feeling better. Let’s just pray he keeps getting better. We are still thinking it’s reasonable to expect to be home ‘early’ July, and the vibe that we get from the medical staff and doctor is the same, but too early to commit. The boys are counting the days and can’t wait to see all their friends and get into the pool! We are taking a bold step and starting to ship some “stuff” back that the kids aren’t actively playing with. We have accumulated quite a bit of “stuff” here and have more construction paper, glue, markers and craft-making paraphernalia than most elementary schools!!! THANK YOU to everyone who has sent us goodies to keep the kids happy. They love all the “stuff”, but with a departure date approaching, we don’t want to make UPS rich by shipping things back and forth across the country.

As far as Kathryn goes…(the new ‘wrinkle’ as Mark calls her)…she is doing great and keeps talking about when we go home to “Norfport”. She loves all the attention and time she gets from us and isn’t happy unless she is the focus of what’s happening. We wouldn’t have it any other way!

Love,
Mark & Krista

Friday, May 23, 2003 8:04 PM CDT

Day 60

Not much excitement this week...and that’s the way we like it! Matt had his bone marrow aspirate on Tuesday morning. All went well with the procedure. He had a little soreness for that night and the next day, but then he was fine. We do not have any results of the test and expect to discuss them with the doctor at the next clinic visit on Tuesday of next week.

Matty's counts have essentially stayed the same...so at least they are stable. His appetite is improving also. Thanks to our cousins in Buffalo, NY for overnighting us the wings from La Nova...he is psyched to eat them tonight for dinner! Matt has also been napping a lot lately, usually 2-4 hours each day this week!!! Too bad Kathryn isn’t being nearly as cooperative. When Matt is awake, he is fine…I guess it’s just his body’s way of saying it needs the extra rest. Today, however, he has not napped. It’s a beautiful day here in Seattle (sunny and high 70’s, perhaps even 80’s) and he and Mark & Michael were outdoors quite a bit. There is a basketball court for the Hutch employees that we have adopted as our own and a lawn area and jungle gym across the street that we seem to spend a good deal of time at too. I will never take a yard for granted again…or a driveway…it can be a real chore to lug your Costco loot through a hotel and up an elevator six flights!!!

Yes, Costco…It had to be done…a visit to their Kirkland store!!! Looks just like the ones back home, only they sell wine by the giga ton & like everything else, priced right! What is with NY, anyway, with that? They sell wine in the grocery stores here too. Not that we would notice or anything…

We have added a few more pictures to the Shutterfly link (MORE PHOTOS) and have included one of the 1,000 paper cranes made by the boys’ school, Ocean Avenue Elementary. There is an old Japanese custom that uses the technique of origami. The paper crane symbolizes long life, good health, and good fortune. As the custom goes, for every 1,000 paper cranes, one good wish is granted. The students of Ocean Avenue, with the help of some of the Japanese students from Northport High, reached their goal of 1,000 paper cranes and have helped us to feel remembered back home. We hope our one and only wish for Matthew’s good health comes true!!

Have a great Memorial Day weekend!!!

Love,
Mark & Krista

Friday, May 16, 2003 10:17 AM CDT

Day 53

Good News! We are out of the hospital!! No real exciting conclusions though. The fever is gone, thanks to some potent IV antibiotics. The endoscopy ruled out graft vs. host and also infection, but it did show some swelling (edema) in some of the blood vessels. They have added an antacid to help calm things down and we are happy to see Matty eating and drinking again. All the blood work and cultures turned up nothing. So, it is a little perplexing, but not every bug out there is detectable and it just goes to show how incredibly careful we need to be…even the slightest thing can land us a stay in the hospital. As much as we want him to be “normal” again, we are going to have to stay really low key until the insides of his body are stronger and in a better position to successfully fight these things off on its’ own.

As for his counts, we are going to do another bone marrow aspirate on Tuesday to check for something called chimerism. We want to see how much of his marrow is donor (Mike) and how much is his. Of course we hope for it to all be donor, but 95 ould be a good thing. They will also test his blood for the same thing, to see how much of it is the result of Mike’s new stem cells vs. any of his own that lived through the radiation and chemo. If there are no surprises there, getting his counts to move up might be something as simple as adjusting his medication dose. We’ll just have to wait it out until we know, but I am glad that the doctors have ordered the bone marrow to be done as it will give us a good look at what is going on. He did have a bone marrow on day 28, but they don’t usually do this specific test, as it almost always shows all donor, so there is no point. Usually they do the chimerism on day 80, but given his counts, we’d like an inside look sooner.

I can tell he is really starting to miss being home. He said he really misses all his buddies, especially Andrew, Kenny, Collin and Justin. Mrs. Braunstein sent a picture of the entire class, all with some kind of flesh colored bathing cap on so they would look just like Matt! He liked that. His hair is really starting to grow back in, though it is tough to tell in a photograph. His eyelashes are also coming back super thick (like he needed that) and he has developed eyebrows like Mark (one of the side effects from the meds and will go away once we are able to stop it).

Have a great weekend and we’ll update you all again next week.

Love,
Mark & Krista

Tuesday, May 13, 2003 9:17 AM CDT

Day +50

Just a brief note to update you all on Matty's progress. Unfortunately, he is back in the hospital. He was admitted on Sunday afternoon for two reasons. First, he was running a low grade fever (99-100) and that alone will get you in for IV antibiotic treatment...Second, he was unable to keep his medicines down due to nausea. We had also seen him really lose interest in food since about Friday of last week. So something is definitely going on. To top it off, his counts aren't (and have never been) stellar, so perhaps this infection has been brewing for some time now and just hasn't presented itself until now. We have been concerned about those counts (WBC and ANC) not continuing to rise and stalling around the 1,500-WBC and 800-ANC mark (normal would be WBC 5,000 - 10,000 and ANC 1,500-7,500). His platelets are steadily growing so it is a little unusual, as that is usually the last thing to recover. Perhaps the new stem cells are doing their job, but the white cells are getting used up by whatever infection is there.

So we are in the hospital to get this straightened out. No clues yet on the infection. Lots of blood cultures and chest X-Rays have all come back normal. We actually have been at this since Saturday night, but they let us come home (at 3:00 am, thank you very much) only to land back in the next day. Today they are going to do an endoscopy (tube with camera on end to take a look into the stomach) to see if there is any Graft vs. Host (GVH) in the gut (their word, not mine). He has steadily complained that his tummy hurts, on and off over the last couple of weeks, but not bad and no other symptoms associated with having something wrong there. We have to check it out....could be GVH or could be an infection. We should get the results 24 hours or so after the test...and yes, he will be sedated.

Will post an update later this week when we have more to go on.

Love,
Mark & Krista

Monday, May 5, 2003 0:30 AM CDT

Day +41

While it is still Sunday, May 4th, here in Seattle, Mark & I would like to say Thank You to everyone who was a part of tonight’s event in honor of Matthew. The preliminary reports from each of our families were nothing short of astounding. No doubt, as we could feel the love and support clear across the country. As I was talking to my Mom by phone about the night, a beautiful rainbow appeared in the sky. A sign of great hope for the future. We hope that you all experienced the positive energy as well and know that we are so deeply grateful to everyone who made the evening possible.

We are looking forward to the pictures, video and journal that will probably not do the event justice, but will be a priceless way to mark the incredible support from all of you back home.

Someday, Matthew will be able to understand what this has meant and how fortunate we are to have so many wonderful people who care about us and are “Friends for Matthew.”

All Our Love,
Mark & Krista

Friday, May 2, 2003 6:26 PM CDT

Day 39

We have had a busy week! Having Kathryn here has added a whole new challenge…but one that we are so glad to take on. We are all so incredibly happy to be with her. She is such fun. The night she got here, Lois picked Mark and her up at the airport. I will never forget the look on her face when she walked into the room here at the Marriott. She kept staring at us and kissing and hugging us the rest of the night. She kept saying, “Are we at Seattle?” It was a night we won’t soon forget. Since then, Kathryn has finally stopped calling me "Nana" and we all have spent lots of time at various parks in and around Seattle. The weather has been pretty nice, so we are taking advantage of the days that don’t bring rain.

We had a great time with the McCourts (Lois, Tyler and Andrew). Aside from corrupting them with the Austin Powers trilogy of videos, we did manage to do some fun things. The boys climbed the 65 foot Pinnacle (like rock climbing) at an indoor sporting spot here in Seattle called REI. Matthew went first and got about half way up! I could not believe how well he did for being out of the hospital only a few days. Lois has the pictures, but I didn’t have my digital camera so we’ll have to get them scanned in and posted. The boys also did some fishing and kite flying at the local parks.

Matthew is continuing to do well. He gets his blood checked 3 times per week and a visit with the doctor once a week. His counts are all doing okay…we would like to see his WBC and ANC moving up, but for the past week it has continued to stay flat. The good news is it is hovering around 800 and that is well above the 500 mark that might get us into trouble. This does not seem to be a big concern for the doctors at this time. They have told us that every patient is different and since the stem cells that Matty got were taken from Michael’s marrow (not his peripheral blood), the engraftment tends to take a bit longer. He had a bone marrow aspiration done last week, and the results of it show NO evidence of the abnormal chromosome (Philadelphia chromosome) or the abnormal gene (BCR-ABL). This, of course, is the best we could hope for, as some CML transplant patients still show a presence of these abnormalities at the 28 day, post-transplant point. But, it doesn’t necessarily mean, we can pack up and move on our merry way. With CML, we hope that the chemo and the radiation Matthew got will eliminate the cancer...but we know that since our bodies are made up of trillions of cells, it’s entirely possible/probable that there are some CML cells lurking about. The hope is that Matty’s new immune system (compliments of Michael) will blow away those remaining cells as it gets stronger and more mature. Bottom line, Matthew will need to be monitored very closely for a long, long time to make sure the CML stays away and to watch out for undesirable long-term side effects from the treatment. In the short term, we are anxious about him getting infections (bacterial, viral, or fungal) and getting those counts to move up.

So, that’s about it. We are all happy to be together again and enjoying life out of the hospital! Check out the new pictures…Can you believe Michael and Matthew made Mark go to Hooters???

Love,
Mark & Krista

Tuesday, April 22, 2003 1:54 PM CDT

Day 29

Hope everyone had a great Easter and Passover!!!

We are happy to report on a number of good news items:

First, after 35 days at Children’s, we are out of the hospital! We got to come home yesterday afternoon. Matthew had been doing so well, that they had let us leave the hospital for 4 hours for the last few days. It has been really good to see him out of the hospital. It has been really good to see him free from an IV pole. It has been really good to see him sitting in the back seat of the car, next to Michael. I know they are small things, but it’s true what they say, you really appreciate the little things. The one thing the doctors and nurses have said is “don’t be surprised if you have to be readmitted to the hospital.” Many children end up back as a result of an infection. So we’ll pass that along to all of you too, so you don’t get alarmed if it happens.

Second, Matty’s counts are doing okay…he isn’t going to win any blue ribbons, but he is doing what he needs to do. We have seen them fall, as a result of stopping the GCSF (aka Miracle Grow). But no one seems to be surprised or all that concerned. We visited the clinic for a blood draw this morning and we’ll see how he progresses over the next few days to see if we need a different plan. He is taking all of his medications by mouth (not fun) and is off the TPN (IV nutrition)…and yes, he has expanded his diet beyond tortilla chips (check out the picture of him chowing down on linguine and clam sauce by clicking on the first link at the bottom of the page entitled “MORE PICTURES”). He is almost meeting his calorie target of 1500. Thanks for all the Easter candy you have all been sending. He has tried some of it and that has helped get some extra calories in (unfortunately for me and Mark too, and we DON’T need it)!

Third, the boys are having a ball with Tyler and Andrew McCourt. They are here for a visit and it has been a huge spirit lifter for the boys. We played mini-golf on Easter Sunday with them when we got to leave the hospital on a pass (see MORE PICTURES).

By the way, Mark thinks the site isn’t very user-friendly and that many of you have not seen the photos on the Shutterfly site that you can get to from the “MORE PICTURES” link at the bottom of the page. I on the other hand, feel you are all PC savvy enough to have found it by now. So let us know if you are just now discovering it because of the multiple references to it in this journal entry, this way one of us can say “I told you so.”

As I type this, Mark is on his way back to NY to get Kate. My parents will be bringing her down on Wednesday, so that means Mark is home, with no responsibility (i.e. kids) except Thumper for one whole evening…and something tells me, he will be taking full advantage of the situation!

So, your prayers and thoughts of us are working!!! The next time you say a prayer for Matthew…push your luck a little and pray for the children we have come to know at Children’s who aren’t as lucky as Matthew has been so far. We are reminded every day, of how fragile life is and how serious and complicated a bone marrow transplant can be.

Love to all,
Mark & Krista

P.S. Congrats to our good friend Theresa Matthews on her first marathon (Boston) and for the great success in raising funds to help Dana-Farber Cancer Research!!!

Wednesday, April 16, 2003 0:34 AM CDT

Day +22 (Tuesday 4/15/03)

We have counts! Albeit a bit sluggish, counts nonetheless. The doctors have added something called “GCSF (Granulocyte Colony Stimulating Factor) to the list of medications Matthew is getting. Its job is to stimulate the production of white blood cells released from the marrow. I like to think of it as Miracle Grow. It helps what would have happened anyway, happen a little faster. The sooner Matthew’s ANC gets above 500 and stays that way for at least 3 days, we will be able to get out of the hospital.

Last I wrote, his ANC was “present”. Since then it has taken it’s time moving up, but today, his ANC was 495 from 321, after only one dose of the GCSF, so hopefully the numbers will just keep climbing and we can break out. More important than getting out of the hospital, getting Matty’s white blood cell count and ANC up means lowering the risk of certain infections. He has done well so far, but 3 weeks with zero infection fighting ability…well, we don’t want to push our luck.

The other thing that we are struggling with is eating. We have a limited diet…tortilla chips and a bit of salsa. For two days now, that is all he has agreed to eat. He is still getting IV nutrition (called TPN) but we are cutting back on it in the hopes of stimulating his appetite. This is likely to be a bit of a long-term struggle for us (my guess only), so patience will really be a requirement. We are trying everything. Some days it’s like a smorgasbord in his room. He complains that his taste buds aren’t working and everything tastes and smells bad.

Speaking of smells bad; today he had to get his weekly chest X-ray where they look for pneumonia. They call it a surveillance X-ray. Anyway, the technician was getting him into position and all of a sudden he made a face and started waving his hand in front of his face….I knew what was coming….He blurted out “YOUR BREATH STINKS!” I almost died. I tried to explain that he says that anytime anyone gets in his face (i.e. me, even after I have popped a Listerine Pocket Pak)…she claimed she had just drank a cup of coffee, and he was probably right….I just couldn’t wait to get back to the room. It’s not the first time he has insulted those that care for him…he is just lucky he can get away with it…for now anyway.

He has a teacher come everyday for 30 minutes. It’s not the most productive thing, but at least it keeps him connected with the notion of school (and I get to go get a cup of coffee at the cafeteria). We miss you Mrs. Braunstein! You always knew the right approach to take with Matty. I’m afraid, most days, his current teacher simply does not know how to reach him. I think she would love it if I just said, forget it. But then, no caffeine could be a big problem (just kidding)! He did like going to school at the Hutch school when he was out of the hospital and asks about going there again…hopefully we can make up for lost time.

So other than counts and food, not much else is happening. Next week will be a busy week. Kate will be joining us and we are all really looking forward to that. I think she will be a good distraction for us at this time. It’s likely we will be getting out of the hospital next week too, as long as nothing comes up. And lastly, we have some friends from the neighborhood (The McCourts) coming out for a visit next week, that will cheer the boys up for sure (and me and Mark too)!

Thanks again for all the cards, packages (Arleen, you are the shopping queen), emails, and messages in the guestbook. It means more to us than you can ever know.

Love,
Mark & Krista

Monday, April 7, 2003 7:55 PM CDT

Day +14

Another week down without any surprises! Matthew is doing fine and this week will be the first time when we can reasonably start looking for signs of engraftment. We will be looking for his WBC (white blood count) and his ANC (absolute neutrophil count) numbers to make their debut. The ANC is a component of the white cells and is most important as it's what helps him to fight off infections. We won't be allowed out of the hospital until this number gets up to 500 (I think). Yesterday and today his ANC was noted as "Present" before that it was "Absent"...so maybe something is brewing. It can take months and possibly over a year for his immune system to fully return to normal. It will be a long haul for sure. He got his last real dose of chemo a few days ago, so now if we leave him alone, maybe Michael's stem cells can get to work and make new blood. With a transplant, you want the new cells to come to life
slowly. The chemo he has continued to receive allows that to happen. It suppresses the immune system so that we reduce the likelihood and severity of the GVHD (graft vs. host disease) that can occur and be either mild or severe or even life threatening...but now we need to get to business.

Matty has continued to get platelet and red blood cell transfusions in the interim...luckily without any kind of reaction (though, today his lips started to swell for no apparent reason, no pain, and then quickly returned to normal)? I'll have to try not to be paranoid at every little 'thing' but better to be safe and report it.

His mouth and throat seem to be doing a bit better, but still no food. His new favorite drink is Root Beer and we have been able to sneak in some vanilla ice cream to make a float! He still has some mild nausea on occasion, but nothing that is a big problem. I am sad to report that his beautiful long eyelashes are slowly falling out, but he is still gorgeous and they will grow back.

Speaking of gorgeous, Nana and Pops have figured out how to use their digital camera...so check the link for some pictures of Kate (yes, she does exist).

Tuesday, April 1, 2003 6:58 PM CST

Day +8

Thanks to everyone who has taken time to sign our guest book. We all really look forward to reading your messages and knowing who is keeping up with Matthew’s progress.

All continues as expected with Matthew, and maybe, dare we say, even a little better than expected. He is tolerating it all quite well...a real trooper. Earlier this past week, he had a couple of bad days. More nausea and in honor of St. Patrick, bright green BM’s! We told him it’s all the bad stuff coming out of his body. They use a pain scale with the kids…six faces that range from very happy (a #1) to very unhappy (a #6). So far, we are using 2’s and 3’s to rate the mouth/throat pain, which is the biggest complaint. He is complaining about stomach pain too, but we can’t figure out (yet) if that is really something, or just the fact that nothing is going into his stomach…Eating and drinking is out of the question, but with the IV nutrition/hydration, that isn’t a big concern as he is maintaining his baseline weight. Matty always was a man of few words, but with his mouth so sore, I’m beginning to think learning sign language might be a good thing. We already have a few signs that Mark & I know how to interpret, some are funny…like when he has to go to the bathroom (I’ll spare you the details)!

With his blood counts having bottomed out, we are getting transfusions of platelets about every other day. I noticed he was itching a spot and when I looked, he had all little blood blisters. When your platelets get real low, bleeding and bruising can be a real problem. So until the new stem cells start making new blood (anywhere from day 7 to day 28), we will have to rely on transfusions to get us through the rough spots. As for the hair, it has started to fall out and make Matthew itchy. I’m trying to convince him that shaving it all off at once is better than being itchy all the time…

So, not a lot of excitement. We like being the boring patient…and hopefully it will stay that way. Kate is still with Nana and Pops. She hasn’t been feeling well the last several days, running a fever that has been pretty high. Nana hasn’t gotten much sleep and I’m sure is out of practice with the ‘up all night’ thing. After a couple of trips to the doctor’s office, we think she has a urinary tract infection. She is always so busy playing and having fun, I think she just ignores it when she has to go. Hopefully she is now on the mend.

We’ve had some great weather here in Seattle. Everything is blooming and budding. We’ve had a few 60-degree days to enjoy without rain, so getting outside for a bit is a good thing…sorry, didn’t mean to rub it in…is there still snow in NY???

Love to everyone,
Mark & Krista

Monday, March 24, 2003 11:28 PM CST

Day 0

Happy Transplant day, as they say. Today was exciting! A major milestone is now safely behind us.

It’s been a busy week. Matthew made it through the rest of his conditioning, and while it was no picnic, he did really well. He has experienced bouts of nausea that are no fun, but for the most part, it is under control with medication. He hasn’t had much of an appetite for the last few days, so they have added IV nutrition to the mix to keep his calories up. It seems to be working well as he had a lot more energy today, compared to the prior few days. He is beginning to get the mouth sores (called mucositis) caused by the radiation and chemo…but never fear, there is pain medication to get him through the tough days. So far, he hasn’t needed it, but it is all set and ready to go. He can control the doses and press a button when he feels he needs a little relief. He hasn’t lost any hair yet, but that isn’t expected to happen for another week yet.

The transplant went smoothly. Michael is such a sport. He was so brave and did whatever the doctors asked him to do. The procedure took less than 1 hour. The doctor said he was very generous with his marrow, he had plenty of it! The worst part was the recovery and the effect of the anesthesia. It made him quite sick for about 4 hours or so. He almost missed seeing Matty get the infusion! It truly was an amazing process. At 8:00 am they began the procedure and by 12:30 pm, Michael’s stem cells were on their way to rescue Matty! Technically, that is what has occurred. The radiation and chemo that Matthew has gotten, has destroyed his stem cells and day by day, they are dying off, and not making any new blood. As a result, we are watching Matthew’s blood counts decline. There are 4 numbers that are key…white blood cells (WBC), platelets, ANC (the part of the white blood cells that fight infection) and hematocrit. That’s what we’ll be watching closely. His WBC today was 700. When he was diagnosed, it was 325,000. His body has seen some big changes over the last few months. Within a few days or so, that number will get to 0, and eventually Michael’s cells will find their way to Matthew’s marrow, and to set up shop and begin creating healthy new blood…the rescue. Check the first link at the BOTTOM of this page entitled “Bolands in Seattle” for a few new pictures capturing life at the hospital and the big day.

Mark’s Mom, Grammi, arrived here on Saturday to help us out this week, so she was here for the big day and to lift everyones’ spirits. From here on out, it’s a bit of a waiting game. We will be keeping an eye out for infections (mostly due to things inside of Matthew). They have already been treating him with all sorts of antibiotics to prevent most of them from starting. We will also be concentrating on keeping him comfortable, which so far, he has been doing pretty well with. After about day 14-21, we will be looking for signs of engraftment. That means that Michael’s stem cells are producing the new blood and we will begin to see his counts recover. And lastly, the docs will be keeping a look out for graft vs. host disease (GVHD). This can be acute or chronic, depending on when it shows up. It can affect the skin, liver or gut. It can be mild or severe…but never fear, there are all sorts of drugs for that too (mostly steroids and things that suppress the new immune system (Michael’s) from thinking that Matthew’s body is foreign). We are lucky, because the incidence of this in a related matched donor is lower, compared to an unrelated donor. How lucky we are to have never had to search for a donor and play the waiting game, facing the added risks. We are truly blessed. Keep the prayers and good thoughts coming.

Love,
Mark & Krista

Tuesday, March 18, 2003 10:49 PM PST

Day –6

As of today, Matthew is halfway through the TBI (radiation). It has been a tough couple of days, in terms of what we have experienced so far. The most difficult part is the fact that he has to be sedated twice each day for the treatment, so recovery is lengthy and he can’t eat or drink anything until about 5:00pm each day. He is admitted to Children’s Hospital and Regional Medical Center, but the radiation treatment is given at University of Washington Medical Center (the locals call it U – dub). His appointments are at 8:00am and 2:00 pm, and while the hospitals are just a few miles apart, the back and forth takes its toll on him…no food, no drink, sedation and radiation makes for a tired Matthew. The good news is that once he is able to eat and drink something, he perks up. Mark called him the human garbage pail tonight as he was eating everything in sight! So, 2 more days of radiation then 2 days of heavy doses of chemo, then one day of nothing and then the transplant.

His central line went in on Friday without a hitch…just takes a little getting used to. He is respectful of it, but not afraid of it as he knows it means no more pokes.

We are all getting used to ‘hospital’ life again. Matty is definitely one of the healthiest kids there. Since he hasn’t endured years of chemotherapy like some of the other children, his body is still strong. Seeing so many sick children is really difficult. We still consider ourselves lucky. Our primary nurse said we have “the best of the worst.” Matthew’s doctor said his stats were ‘stunning’… Hoping we can hang onto that as long as possible. The hospital has a lot of comforts for family members, like showers, lounge with computers, patio, and even an indoor pool. They have a really nice playroom, but since Matthew is a transplant patient, his immune system is suppressed and interacting with other patients is out of the question. We don’t have to wear gowns or masks, but hand washing is even more important than ever. Anything we bring into the room that he will handle needs to be wiped down with really potent wipes, that judging from the smell, will surely kill any germ on contact. One parent can sleep in the room with him. Tonight Mark is there. There is a lot to this caregiver business. The nurses are very attentive, but keeping track of everything and “managing the room” is time consuming for parents. They want us to track anything and everything that Matthew eats and drinks…along with what comes out. They keep a close eye on his vitals (every 4 hours), do daily blood draws, daily weight checks, and all sorts of things that make us feel there is no stone unturned. There are signs everywhere about infection control and if you even THINK you are coming down with something, they do not want you there. Some of the kids are in isolation…when that happens, the patient and the caregiver can not leave the room, unless it is to leave the hospital…if you need something outside the room, someone has to get it and hand it to you from outside the room. There are about 40 beds on the unit which is for transplant and hematology oncology patients…and there doesn’t appear to be any empty rooms.

So, all in all, still going according to plan and taking it one day at a time. Michael is doing well and is still on schedule to donate on Monday, 3/24 (day 0 in transplant talk). We miss Kate lots and are looking forward to a more manageable time when she can be with us. Mark’s Mom is coming on Saturday and will be here for a week. The nurses have said that the first 2 weeks after transplant are the most difficult, so having Grammi here will be a big help. We know that the ‘reserves’ are ready to jump in at anytime…it’s a secure feeling to know that so many of our friends and family would be willing to be here on a moments notice. Thank you! And Thanks to all of you who have signed our guest book. It really is fun to read all of your messages.

Love to all,
Mark & Krista

Monday, March 10, 2003 11:58 PM CST

Things have been pretty uneventful this past week. Just keeping up with our scheduled appointments. Michael has blood work on Fridays and Matthew on Tuesdays and Fridays. Matthew stopped taking the Gleevec he has been on since mid-January to make sure that his system is cleared of the drug before they start things on 3/17. So far, that is still the date we will start things. Matthew will get 4 days of radiation (2 times per day, 1/2 each session). This is called Total Body Irradiation (TBI). He will be sedated for each session, and since he can't eat or drink for 3-6 hours before each sedation, he will need to be admitted to the hospital and get IV hydration. He will be able to eat/drink when he is done each day. After the TBI days, he will get a drug called Cytoxan for 2 days intravenously. Then, one day of nothing and then the transplant.

On Monday, 3/17, besides being St. Patty's day, it will be "day -7" because it is 7 days to transplant. The day of the transplant itself, is "day 0" and then you start counting up...one day at a time, until the magic of day 100, when we can come home!!!

This week, we have clinic visits, food safety/nutrition classes and on Wednesday, our "Data Review" with the doctors...this is when they go over all the tests done on the boys with us to and give us the results, talk one more time about what is involved, make sure we understand the risks and have signed the consent forms for all the procedures, etc... On Friday 3/14, Matthew will get his 'Hickman' line installed. I saw Dr. Hickman in the elevator the other day, so I guess we are in the right place for this. The Hickman line is a central line in the chest from which frequent blood will be drawn and medications given. It is done in the hospital under sedation. He shouldn't have too much pain, just some soreness in the area that should pass after a day or two. He has been doing so well with all the procedures/sedations, I just hope it stays that way. Every time he goes through something big and does it well, he gets a reward...so, we stocked up with goodies on our big trip to Target today! The goodies are stashed away in the closet...the Yu-Gi-Oh! Playstation2 Game is our trump card!

Michael is attending school here and he likes it...I mean, what kid wouldn't...he said, "Mom, I only held a pencil once today" (Don't worry Ms. Whaley, we're not letting him get away with too much, he is writing in his 'Seattle Journal' almost every day)! They call it the 'field trip school' and I can see why. Matthew is only attending after regular school hours for one-on-one tutoring. I try to work with him a little with the workbooks Mrs. Braunstein gave us, but he says they are too easy! Can you imagine that Carol, if it's not impossible then it's too easy!

We visited Snoqualmie Falls over the weekend. Of course the boys wanted to go to the skateboard park, but we convinced them that this would be fun too. It was. They enjoyed hiking the trails down from the top of the falls to the bottom. Check out the new pictures by clicking on the first link at the bottom of the page (Boland's Seattle Sites).

Thanks to all of you...for the messages, the calls, the mail, the presents, and especially to all of our friends back home who are helping with everything from shoveling the driveway, to taking care of the mail and Thumper, to making the "Friends for Matthew" fundraiser happen. We continue to be overwhelmed by the kindness and generosity that has been extended to us.

Much Love,
Mark & Krista

Monday, March 3, 2003 2:29 PM CST

Hi everyone!

Mark and I, along with the boys arrived here in Seattle one week ago. We are busy with lots of appointments with all kinds of doctors, nurses, pharmacists, etc. Before we can move forward with the transplant, it is important for the doctors to get a baseline on Matthew, including dental, vision, pulmonary, cardiac, etc. They want to make sure they have a picture of what ‘normal’ is for him so they can monitor how he responds throughout his treatment. Some of the tests can take more than a week to get back. On Tuesday, he will have to get a bone marrow aspiration and biopsy. He will have to go to sleep for that. He had one when we were at Schneider Children’s Hospital back home. They also may do a spinal tap to see if any of the cancer cells have spread to his spinal fluid. They are very thorough here. The week before his transplant, we will have a ‘data review’ with the doctors to go over everything they have learned about him. So far, there are no surprises…let’s hope it stays that way.

Michael is doing fine. They have him taking an Iron supplement…tastes awful, like rusty metal. And he is getting a weekly shot to boost his red blood cell production to lessen the likelihood for needing blood products after the ‘harvest’ of bone marrow. He is being such a sport and not complaining about anything…for the most part.

The boys will be starting school tomorrow. It’s called Hutch School and is just for patients and sibs or children of patients. They are vigilant about keeping a healthy environment. Since Matthew is a patient, he will get one on one tutoring to further minimize the risks of getting sick. Keeping both boys healthy is really important right now…they call me the Purell Queen!

The transplant process is scheduled to start March 17. After one week of ‘conditioning’ as they call it (nice word for major doses of chemotherapy and/or radiation), Matthew would get Michael’s stem cells taken from his marrow much like a blood transfusion. Then the waiting begins. If you want to know more about what is involved with a transplant, check out this link http://www.fhcrc.org/patient/treatment/process/

Kate is having lots of fun with her Nana & Pops. We miss her, but for now, it’s better that we have the time and energy to focus on getting things going. There is lots to do in Seattle. We are trying to do as many fun things as possible. People are really into the great outdoors and COFFEE…they drink it all the time…and really strong too. The mountains here are amazing. We’re hoping to get to Mt. Rainier this week when we get a clear day.

We’ll be updating this site weekly, so check in to see how things are going. We miss all of you back home…but NOT the snow!

Tuesday, January 21, 2003 at 04:09 PM (CST)

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