Matthew Kocher

Monday, July 21, 2008

HAPPY THREE-YEAR POST TRANSPLANT, MATTHEW!

I apologize once again as I am very late in getting out an update.  Someone did say to me that as often as they check Matthew's website, they can only assume if there isn't anything new posted it must mean there isn't anything new to report.  I can happily say Matthew has been continuing to do fantastic with no real news to share until today.

On July 8 we drove Matthew into Children's Hospital for his three-year post transplant tests.   Our first stop was to the Cardiac ward for Matthew's EKG and Echocardiogram.  We then went to the Oncology floor to have several vials of blood drawn for a battery of tests.  Followed by Dr. Wollman's exam, we grabbed a quick lunch and headed off to the Pulmonary Lung Function test to see Matt's buddy, Reed.  So what did all those tests mean?  Today Dr. Wollman called with all the results of Matthew's tests.  As soon as I answered the phone I could hear the smile on the man's face and just knew everything was great.  Yes,Great!  All tests came back "Normal".  His blood levels are all normal and cancer-free with "normal size and shape of cells".  His "Fish" test came back that Matthew is continuing to produce 100% of female cells...exactly what we had been praying for.  His liver enzymes are all normal, as well as his thyroid, hormones, EKG, Echo, and lung tests.  Doctor Wollman has given us the green light for an extended time away from Children's as we do not have to return for a physical and blood tests until January.  Six months is going to be wonderful!  Dr. Wollman asked me why I was so nervous about these tests.  He said I already knew the answers because Matthew looks so fabulous. Perhaps after three years of great reports I will relax a little...maybe.  We ended the conversation with Dr. Wollman asking me to hug Matt, rub his head, and give him a kiss, something he always does with all his "children".  What a doctor...what a man.  He treats not only the illness, but the patient and his parents as well.

While we were at clinic, we ran into several other doctors.  One was Dr. Orlando, the oldest oncology doctor at Children's.  He took one look at Matt and asked him if he knew any new and better jokes.  I was quite surprised that he remembered Matthew from three years ago, but this was also the doctor that Matthew used the "fart machine" on.  It was quite funny at the time, and Dr. Orlando came back a few days later with his own jokes for Matthew.  We are truly blessed to have Children's so close to us and have such a wonderful support team.

So what is new with Matthew....He ended his freshman year in high school with a 4.0; went to the Poconos with some wonderful people from Children's Oncology Clinic, Dr. Shaw, and some great friends; went to Brockway to see all his cousins on his dad's side of the family for the July 4th festivities; went to Pinehurst, NC and then Myrtle Beach for a week; finally broke 90 in golf; has a girlfriend; and has been golfing, golfing, and golfing.  Yes, I slipped it in there, Matthew has his first girlfriend, Lauryn.  She is a wonderful girl who is sweet, nice, and tries to keep him in line.  We knew it was serious when Matthew wanted to play only 9 holes of golf one day so he could get to see Lauryn.

I believe I have mentioned this before, but as I watched a movie today I was reminded of something....  When we pray for courage, God doesn't grant us courage but opportunities to be courageous.  When we pray for peace, God grants us the opportunity to experience peace.  I believe I was given the latter opportunity tonight and will take full advantage of it.  I am content and full of peace knowing that at least for tonight, my son is cancer-free and very healthy and happy.  Thank you for your continued support over the past three and a half years.  We walk by faith, but not alone.  God Bless each of you!  Love, Lori

Tuesday, March 11, 2008

Tonight I spent a little time reading through my journals I have written in the past and decided to look at where we were three years ago tonight. The good news that day was that Matthew's ANC number had hit "0", which meant the first round of chemotherapy had killed all the cells in Matthew's blood stream...both good and bad. Two years ago at this time my journal entry reminded me that in March of 2006 we had a good day because Matthew's broviac (central line) had finally been removed from his body. Last March I was writing to say that Matthew was starting to 'plan ahead' for his future by preparing for a class trip to Washington, DC with his classmates and to join the Track and Field team. I am pleased to let everyone know that the good news continues this year. Matthew's Oncology Clinic appointment produced a 'clean bill of health' for Matthew.

Our appointment was scheduled for 1:30 pm today. We arrived to find a line of cars waiting to enter Children's Hospital. Dad stayed with the car while Matthew and I made our way to the elevators to take that dreaded ride up to the clinic. However, rather than a quiet and somber ride, we were greeted by one of Matthew's favorite doctors, Dr. Tersack. She was the doctor who permitted Matthew to be unhooked from all IV's and go outside the hospital to visit Cassie while he was in the transplant room. We were also surprised to also have Sister Lisa ride the elevator with us. This is no ordinary nun, but a rather "spunky" young lady who can put a smile on just about anyone's face. It was fantastic to see both of them today, but even better to see them marvel over how fabulous Matthew is looking.

Bryan finally was able to catch up with us while we were waiting to be taken back to see Dr. Wollman. Once again, Nikki from Childlife came to visit us. Without her, our waiting time would seem endless. However, with her smiles and jokes, the time passed quickly and pleasantly. She is an amazing person. Thank you, Nikki, for your time and love of your profession. Matthew had a little difficulty with the blood draw today. The nurse tried to take the sample from his left arm. I should have been a better advocate for him and stopped the procedure, but thought he had a good vein so let her try. Needless to say, after the "pinch" and several adjustments to the needle, it was determined she couldn't get a good draw from that vein. We quickly moved to his "good" right arm where he immediately produced the necessary blood to fill those vials quickly. The worst was over for Matthew, but the waiting began for me! Dr. Wollman examined Matthew and determined that he looked fabulous. He wanted to know if he was putting fertilizer on his head because his hair grew in so full and thick. Everything else checked out great, except for the little virus Matthew has going on in his throat. Nothing serious, it will run its course. Finally....blood results came back and Dr. Wollman told us they were "Fine". Fine! Not good enough. I asked what was wrong only to be told with a smile that they were good...great! The good doctor knows me by now! The smear was checked again, and all cells are of normal shape and size. His counts are all within the normal range and all doing exactly what they should be doing.

So where do we go from here....our next appointment is July 8. It will be close to his three-year transplant anniversary date, so all yearly tests will be performed. He will see Dr. Wollman and have a battery of blood tests run, followed by an EKG, Echocardiogram, and a pulmonary lung function test. A long day, but we can handle everything knowing we get to come home at the end of the day with our healthy son. Hopefully, after July, Matthew will be able to return to the clinic every six months until finally he returns only once a year for his check-ups. Life truly is good, God is Great, and miracles do happen! Fine...I don't think so. We are all doing GREAT! Thank you for all your continued prayers and well-wishes. God bless each of you and your families! Love, Lori

Friday, February 29, 2008

The snow silently fell in the evening sky. It was a beautiful sight to see. Everything was coated in soft, fluffy snow. I watched quietly out the window as emotions began to swirl. First the remembrance of that day three years ago tomorrow, then the gratitude for all the miracles I have been able to witness every single day. I watched him, climb the high pile he had made, carefully step onto his snowboard, and take off down the hill leaving his imprint in the snow as he glided all the way to the back of the property. He jumped off at the last moment to avoid collision with the fence, and then began running up the hill with his dog beside him. He saw me in the window, watching, and he smiled, waived, and gave two thumbs up. He was having the 'time of his life'. Three years ago I watched out that same window as he shoveled snow and prepared to board his sled. Then the phone rang. It was the doctor's office telling me to get him off the slopes, into the car, and to the office immediately. I think back to that day and decide, she knew. Dr. Breslin knew before she even saw him what was happening to my little boy that night. I watched him tonight seeing not only the little boy who was so thrilled to be outside playing in the new-fallen snow, but the young man who became my hero three years ago.

A lot has happened in the past three months since my last writing. I guess you could say all has been wonderful. We celebrated a fabulous Christmas with everyone getting more than their share. It was a quiet Christmas at our house with just the five of us this year, but it was meaningful. To realize the gift of Christmas so many years ago, and we just continue to receive His presents daily. New Years was celebrated with a small party of both Kristina's and Matthew's friends. I hope they all enjoyed being here as much as we enjoyed having them. I love getting the opportunity to spend a little time with all the wonderful, positive, intelligent, and compassionate friends they have. I think any parent wishes four things for their children: Love, Happiness, Health, and Friends. I believe we are blessed to know our children possess all of the above.

January brought an exciting time as the West Allegheny Marching Band travelled to Walt Disney World in Orlando, Florida to participate in the parade down Main Street. It was a wonderful time despite the 20 hour bus ride (I actually got to chaperone the trip). The students were all terrific, my roommate was a god-send (Michael's current teacher), and we all had a fabulous time. I think one of the highlights of this trip was the opportunity to visit with Matthew's Childlife Specialist, Shalese, who moved to Orlando the year after Matthew's treatments. It was so great to see her, and it really made Matt's experience to Disney perfect! He has actually been playing X-Box Live with Dan, one of the other childlife "family" members from 8 North that is currently living in West Virginia. Matthew couldn't be happier. The cancer totally sucked, but so many friendships have come out of his experience.

Matthew continues to do extremely well in every area of his life. His grades have been soaring (all A's), he is very active in the stage crew and is preparing for the high school musical they will put on over the next two weeks, and he has asked to join track and field this spring. Matt has been taking Honors Biology this year and has finally started opening up about his illness. The boy who never wanted to know anything, just what he needed to know to get better, is now asking questions about his diagnosis, treatment, and survival. I am happy that he is finally comfortable enough to open up and talk about what happened to him three years ago. One area I am particularly excited about is that Matthew has passed me up in height and has almost reached his sister. Also, he no longer is showing his ribs but rather, has a tiny little bit of 'meat' on his bones. Finally!! He truly is happy, healthy, and has a wonderful circle of supporting friends. I can't thank them enough. As for love, he provides it to all of us on a constant, daily basis.

We will be travelling to Children's Hospital Oncology Clinic on March 11 for his regularly-scheduled check-up. Please say an extra prayer that everything is absolutely perfect with Matthew's blood test. As tomorrow's three-year anniversary date of diagnosis approaches, I still continue to reflect on all the wonderful things each of you did for our family during the time Matthew was fighting for his life. I thank you, from the bottom of my heart, for every wonderful prayer and selfless act of kindness you performed. Matthew's Miracles began with YOU! God bless! Love, Lori

Thursday, November 29, 2007

Miracles...big or small, we'll take them all!

Again another two months have passed since my last writing, and I must apologize. I honestly do not know where the time is going, but it is a fabulous thing that we are all keeping busy with our hectic, healthy, happy lives! I do not even remember much about the month of October. Matthew was busy finishing up his golf schedule with the JV Team at the high school as well as spending every weekend at a Friday night football game and Saturday band competition. The kids all did great, and we were so proud of Matt's accomplishments in his extra-curricular activities this year. The first nine weeks at school also ended, and if I must brag...Matt scored a perfect 4.0. Pretty impressive for a kid who was expected to have some lingering effects of all the chemotherapy he had during his treatments and transplant. He actually has three honor classes this year, so we were a little worried about how he would do. He has made me promise to relax and not stress so much about his grades. He knows when he needs to study and for how long in order to do well. I'm still allowed to push him when it comes to up-coming projects tho. In that area, he still procrastinates. Typical teenager!

On to the medical news. Matthew had his four-month check-up with Dr. Wollman at the Oncology Clinic at Children's on Tuesday, November 13. This was probably the most relaxed Matt has ever been for a check-up and blood draw. Yes, I was still nervous until we received the blood results and heard the official news from the good doctor. I should have believed Matt when he told me he was healthy and fine. Funny how the heart knows one thing but the head can convince it otherwise. Not only were Matthew's numbers all perfect and his blood smear looked perfect with all "normal looking cells", but the miracles continued as so many doctors, nurses, and friends came into our room because they had heard that Matt was in for a check-up and that he looked fabulous. It is a day like that Tuesday that makes me realize just how fortunate and blessed we have been in Matthew's recovery from his cancer. He looks fabulous, he is growing taller, slowly gaining weight, is active, and healthy. When Dr. Wollman asked Matt how many days of school he had already missed this year and Matt replied "none", that is when I think I realized what a miracle he truly is. We spent the few hours we were there laughing, hugging, talking, and seeing those wonderful people who have touched our lives in such a special way. During one of Matthew's rounds we had a first-year resident doctor who found Matthew's humor to be on the same level as his own. This doctor also returned to see Matt when he was in the hospital in October 2006 with the Shingles and asked if he could borrow Matt's "fart" machine. Matthew ran into that doctor in the hallway on the way home from clinic. The doctor did not even recognize Matt because he was so much taller and healthy looking. He definitely remembered the good times with Matt, but walked away in awe and with a smile on his face as he repeatedly stated that Matt looked "Amazing...simply amazing!" Does this happen to all transplant children? Unfortunately not. Miracle...absolutely!

The only downside to Matt's visit with Dr. Wollman was that the good doctor wanted to share the "happiness" with Dr. Breslin in giving Matthew his flu shot. Matt was scheduled to receive that shot on Thursday, the 15th, but Dr. Wollman said he could have it that day. Matt was a real trouper and didn't even flinch when his nurse, MaryEllen, brought in the needle. The shots continued two days later at Dr. Breslin's office (pediatrician) when he received two more shots in his series of immunizations. The best part for Matthew was hearing that the end is in sight. He will return in December for his MMR shot and again in June for his yearly check-up with her and will receive his final two shots to be completely finished with his immunizations. Can we say P-A-R-T-Y here?!!! For Matthew, that will truly be a day for celebrations. A final thing to check off his list to returning to a "normal" teenager again.

Many people still as us how "we did it" all those months in the hospital. My first response is always, "You do what you have to do." But I also believe that our lives were touched by so many important people during that journey...some we may never see again, others that we have built a life-time of friendships with, and others who I believe Matthew has touched in some special way. Any experience in life is all in what you make of it. I have been blessed with a family who saw the challenge and focused on the positive...health, family, friends, love, laughter, and above all faith. What does tomorrow hold for us, only God knows. For today, I'm enjoying the ride and waiting to see what will come next. I pray it is continued health for all my family, but I do know no matter how small or large the miracle is...I'll take them all! Happy belated Thanksgiving to each of you. Please know we continue to be thankful for each of you, no matter how large or small a part you play in our daily journey. God Bless you! Love, Lori

Thursday, September 27 

Where to begin on a journey that never has an end..... 

So much has been going on in Matthew's life the past two months, all positive, all fun, all great!  Medically, Matthew has been feeling great since our last clinic appointment in July.  Two weeks ago he was extremely tired, had body aches, and ended up with what we thought was the start of a sinus infection.  Fortunately after many prayers and worried nights, Matthew rebounded and is feeling great again.  I guess all those doctors who say that Matt could be 35 years old with a cold or looking pale and I will still question if he is feeling okay and when was his last blood test.  It is strange how time can pass and I honestly don't worry any more, but how a little comment or look can quickly return all the emotions of living with cancer.  And so, the journey continues but it is filled with much more hope and optimism than two years ago at this time.  Miracles! 

As for Matthew's daily life, he will tell you he is as happy as can be.  He started high school this year in 9th grade.  Although the first day of school he came home and said he wasn't going back and begged me to have him home-schooled, things are going much better.  He has adjusted very well to being a little fish in a big pond, getting to know a lot of other students, maintaining excellent grades on a schedule that holds mostly all honors classes, and has kept himself quite involved with after-school activities.  Matthew joined the Marching Band this year and in two months learned how to play the saxophone as well as march.  He still struggles a little with the difficult music they perform for their competitive show, but he is having a great time being with all the other band students.  They have welcomed him with open arms, and we couldn't be happier.  It is by fate, but during their competitive show Kristina and Matthew actually perform next to each other at least three times on the field...the freshman/the senior...the brother/the sister...the patient/the donor.  Yes, miracles! 

Matthew's highlight this school year, however, has to be the fact that he tried out and made the JV golf team.  He was so excited and honored to have made the team knowing so many wonderful players have been golfing for years were also trying to make the team.  Matthew has had his share of good golf days and bad, but he will continue to make us proud with his drive to succeed and always do better.  By the way, if you ever have the chance to talk to Matthew, don't expect to get much conversation out of him unless you want to talk golf.  He usually doesn't have much to say about anything, unless golf is involved.  How far will he go in golf we aren't quite sure.  He will not be the next Tiger Woods, but he'll always be our "Panther Forest"...trying hard, having fun, and having a passion for something he loves.   

Today Matthew went to his pediatrician for his next round of immunization shots.  In this third round he is scheduled for a total of 8 shots, but Dr. Breslin said it would be inhumane to give him any more than three today.  We return in six weeks for another three and a few weeks after that he will receive the last two.  I am not sure what his schedule will be after that, but the bulk of the immunizations are up-to-date again and the end is in sight.  Having three children receive their shots as infants, I can tell you that it is more difficult for me to see them get the shots as a teenager.  As an infant, they don't know what is coming.  As a teenager, he worried all week about what was to come.  He did great and didn't even flinch.  I even suggested they just give the other shots so we could be done, but Matt didn't find that very amusing.  My boy.  He's been through so much, continues to deal with circumstances beyond his control because of the cancer and/or treatments, and yet maintains optimism, hope, and a positive attitude.  For me to be half as brave as my son would be a huge accomplishment.  I admire him and all those who have gone through living and dealing with cancer and cancer treatments.   

I stated in the beginning "where to begin on a journey that has no end".  I am so happy to say that our journey hasn't ended.  To have an end would be an end to our miracles.  The journey continues and although there are days when I am concerned where the road will lead, I am certain that I will not be alone.  As of tonight's writing there have been over 100,000 hits on Matthew's website.  I cannot comprehend how many people check in on our child every single day to find a glimpse of how he is doing.  I apologize for not writing sooner.  The summer passed so quickly, school began with a demanding schedule, and our lives have been filled with happiness and love.  I know it has been two years since Matthew as in the hospital, but I do want to thank each of you again for everything you did to help our family survive the nightmare we endured.  Thank you to the family members who came to stay with Kristina and Michael, putting your own lives on hold to help us keep some sense of a normal routine for our other children; to those of you who made meals for the family; delivered meals to the hospital; donated items; shopped; ran my children; called the hospital every single day to check to see how I was doing; created and maintained a website so I didn't have to come home every night and make 20 phone calls; babysat; sent cards, postcards, letters, money, lottery tickets, balloons, stuffed animals, toys, and games; planned, served, worked, or attended a spaghetti dinner; planned and participated in a fundraiser; organized, worked, and donated at a blood drive; sold lemonade along the road; prayed and prayed and prayed.  I know I have probably forgotten someone along the way in this writing, but I will never forget you in my heart, my appreciation, and in my daily prayers for all that you have done for us.  Truly, we would not be where we are today without each of you and therefore, I thank you for being on the journey with us.  By the grace of God, I plan to travel this journey with you for many years.  God Bless you and your family.  Love, Lori 

Tuesday, July 17, 2007

Great....Fabulous....Perfect! That is how our day at clinic turned out today for Matthew's 2-year post-transplant check-up!!

Today was a long day for all of us, but it couldn't have ended any more perfect! Our day started with Matthew's first appointment at Children's at 8:30 am with an echocardiogram and EKG. The technician was very nice and friendly, but of course he couldn't tell us anything. We moved on to the Oncology clinic for Matthew's blood work at 10:30. They took many vials of blood to check for a long list of things, but Matt had his "game face" on and handled the draw very well. MaryEllen, Matt's nurse, always laughs at how serious he becomes during the blood draw. We swear he isn't even breathing, but Matt argues he is. This was the shortest amount of time I have ever had to wait for results. The lab technician handed us our printout in a matter of minutes with a smile on her face and said everything was "GREAT". I love that word! Matthew's numbers did all look fabulous....red count, white count, platelets, etc...but we had to wait for the good doctor to see the slide and tell us himself.

On to the pulmonology lab at 11:00 for Matthew's lung function test. Although I would fail this test and it would be my most dreaded of all tests...this is actually his favorite one. He loves Reed and requests him every time. The test comprises of several "mini" tests which involve Matthew breathing in or out for long periods of time, or very quickly---I'd get dizzy and pass out. Surprisingly, Matt does great. They say a passing grade is anything above 75%. Matthew was averaging 103-113% on each test....over-achiever! Reed even said there is no evidence of Matthew's asthma which he had since he was two years old. Guess Kristina's cells are improving several things inside his body!!

We had a two-hour break so decided to grab some lunch. Ended up running into two of Matt's favorite childlife specialists, so we talked them into sitting with us. What a great lunch. Such caring, loving, supportive, and fun people. Dan is actually leaving Children's next week to return to graduate school. He wants to pursue a career as a pediatric physician's assistant. If you've ever met Dan...the kids are going to love him!! Best of luck, Dan!! We are going to miss you!

Returned to the Oncology Clinic a little after 1 and waited for our appointment. We were Dr. Wollman's first appointment of the day, so we were actually seen at 2:05 (I told you it was a great day!) Dr. Wollman said Matt's blood smear looked great, he looked perfect, and everything is good. He checked Matt all out, answered all our questions, and told us to return to clinic in November. Yep...November 13 to be exact. We are returning to clinic every four months. That is only three (3) times a year. I can't believe that when this journey started we were supposed to return to clinic 3 times in one week. What a blessing...what a miracle!!

Although we thought the good news ended as we drove home, we received a phone call from Dr. Wollman while we were eating dinner. He said he was amazed that all Matthew's test results were back already. His echo and EKG were perfect as well as all his other labs (such as liver, kidneys, and a ton of other things). Guess I won't have to wait by the phone or call the clinic several times looking for results on these ones!

The day was also filled with seeing many wonderful people today. We were able to see so many doctors, physician assistants, child life people, and beloved nurses that so lovingly took care of Matthew and our entire family two years ago. As I look back on the past two years, I realize I was sometimes filled with frustration over lost labs or inaccurate information, or even a doctor who inappropriately told my son he had leukemia that night in the emergency room. But I also realize these people are caring, compassionate, professional human beings who sometimes make mistakes like we all do. I also realize that I could not do the job that they do day in and day out every day. They work long hours seeing such a devastating disease, yet greet each child and family with respect, dignity, and concern. Some days they see patients like Matthew who seem to be winning the war on leukemia and walking the journey with great health. Some days they hold hands with children as they take their last breath or suffer with the side-effects of the harsh treatments they have received. I respect these people, and I cherish each one of them for the profession they have chosen. As with any profession, there are good ones and not-so-good ones. We have been blessed to meet many of the great ones! Thank you...each and every one of you...for the job you do every day. Matthew is our miracle. The journey is far from over, but I look forward to each new day! God bless each of you, and thank you for your support, love, and prayers! Love, Lori

Thursday, July 5, 2007

"525,600 minutes. How do you measure, measure a year? ....in daylights, in sunsets, in midnights...in laughter, in strife...How about love?...Measure in love." Lyrics from a song in the musical "Rent"

525,600 minutes is equal to one year. 1,051,200 minutes is two. Let me begin tonight with a memory of two years ago at this time...Matthew was able to attend his July 4th celebrations outside of the hospital, watching the fireworks from a hilltop near our home. I remember watching him...his bald head, frail body, but huge loving eyes and smile that warmed me and I wondered what would become of my son in the coming weeks as he prepared for his transplant the following day. On July 5, 2005 we entered Children's Hospital in a transplant room to begin his regimen of chemotherapy that would wipe out his entire bone marrow...his entire ability to make white cells, red cells, and platelets. What would happen....

It sounds like a lot of time, but in reality, the time has gone so quickly and with so many memories. I choose to measure those years remembering all the laughter and love. There were bumps in the road and even a few pot holes, but the journey so far has been filled with so many miracles, so much laughter, and love. Matthew is approaching his two year transplant anniversary, and continues to be a healthy, happy teenage boy. Where to begin on this update....

Matthew did go to Kennywood with all his friends and had a wonderful time. He also was able to attend his 8th grade field trip which he also greatly enjoyed. School ended with Matthew maintaining a 4.0, summer began, and Matthew has been busy ever since. Bryan was able to take Matt to the US Golf Open here in Pittsburgh. Matthew was so excited to receive so many autographs from so many great golfers on Monday, a practice day; and he was just as thrilled to be able to witness some amazing golfing talents later that week on the actual first day of the Open. Two weeks later, Bryan and Matthew flew to North Carolina and spent a long weekend golfing at Pinehurst. To Matt's pleasure, he kicked his dad's butt and can officially be referred to as "Panther Forest" after his golfing great "Tiger Woods". We thank the Shelby's for their warm and loving hospitality. God brings some amazing people into our lives! Matthew has also attended his second Bone Marrow Transplant picnic and had a great time seeing old friends and amazing and dedicated doctors and nurses. Thank you for everything you do! That same afternoon, Matthew was honored to be at the wedding of his homebound teacher, Katie Scott (now Mrs. Troup), who along with her new husband made a loving and thoughtful donation to the Matthew's Miracles Fund in lieu of favors for the guests at her wedding. How beautiful and happy she looked...as always! Congratulations to a fabulous teacher and friend! (Can you please go to the high school with Matthew this fall??!!)

June 15 was a memorable night for me. At her dance recital, Kristina was dancing on her point ballet shoes to the song, "When You Wish Upon a Star" and Matthew accompanied her. Although he only briefly came out on stage to hold her in some of her poses and assist her in some movements, the song had so much meaning to our family that it deeply touched my heart...and yes, I cried.

Speaking of crying...Bryan just asked when our next clinic appointment is. July 17. It will be a long day spent at Children's as we have a lot of blood work, echocardiogram, EKG, and a pulmonary lung function test. Although we do not anticipate any problems, one can never be certain. A very dear a friend of ours, who had a transplant in May 2005, just discovered a heart condition during his yearly echo. They are not certain whether this is a result from the chemo or something that will correct itself. They will repeat the test again in a few months, but in the meantime...a few extra prayers for loving Victor would be greatly appreciated!

I once wrote that I usually write an update on Matthew when I become "inspired" by something. It sometimes is a song, a passage in a book, the good results from the doctor's office. I suppose tonight I'm writing because of a movie that we recently went to see, "Evan Almighty". "God" was speaking to Evan's wife and said that we often pray to God for many things, but God doesn't give us those things...he gives us the opportunity to experience those things. I've often prayed for relief of my fears and anxiety. God hasn't taken those things away from me, but he has given me the opportunity to experience days without fears...he has given me days to experience peace. Tonight I am at peace knowing how happy Matthew is. He looks fabulous and feels even better! He is spending time with his friends, family, and dog doing what he loves the most...making memories! May each of you be blessed with the opportunity to experience whatever it is in your lives that you need the most. Sometimes it has always been there, you just have to look a little harder! God Bless each of you tonight and always! Love, Lori

Monday, May 14, 2007

There are moments in your life when everything seems to be going all wrong. Those are the moments you pray, cry, and reach out to your family and friends for hope and inspiration. We've had many of those moments over the past two years. Then there are those moments in your life when everything seems to be going extremely great...better than you ever expected...almost perfect. These are the times when we rejoice, say prayers of thanksgiving, cry tears of happiness, and can't wait to tell our family and friends how we have been rejuvenated and given new hope. This update is the moment when I am excited to write all the wonderful things that have been happening in our lives since my last writing. I can honestly say, I am writing with the most optimism I have ever felt. Where to begin.....

Matthew had his birthday on Tuesday, May 1 and turned 14. It was such a momentous occasion knowing he had reached another milestone in his life. He celebrated with his friends in school as well as with his family here at home that night. Not fancy, but meaningful.

This past Thursday brought us to our two month oncology clinic appointment at Children's Hospital. Although this seemed like the longest amount of time we ever waited for an appointment, the results were well worth the wait. We spent our time waiting while visiting with many people...the Child Life friends from 8 North, doctors we used to see on a regular basis, and Tammy who gave Matt his favorite "massages". Our appointment was scheduled for 11:30 am. We were not even seen by a nurse to take his blood until after 1 pm. Just as I was getting ready to go out to the lab to retrieve his results, Dr. Wollman walked into the exam room with a smile on his face...everything looked "Great". Matthew's numbers are all within the normal range and his cells all looked normal. We discussed his chronic sinus infection (and were referred to an ear/nose/throat doctor) and discussed Matthew's knee and joint pains he has been having. At first the doctor thought it might be a sign of complications from all the chemo Matthew received, but then he examined Matt and decided at this point....he is just being a normal teenager and his body isn't used to all the physical activity yet. We will continue to keep an eye on the "aches and pains", but at this point, everything looks good. Matt's next appointment is scheduled for July 17. At this appointment, Matthew will have extensive blood work done checking many levels of things like his platelets, white cells, red cells, kidney functions, liver functions, and even things like his hormone levels. After his exam, we will then have his two year exams done on his heart and lung functions. This will be an extremely long day for Matt, but Dr. Wollman believes that everything is going to come back perfectly fine. He cannot see, based on his current blood work, that anything will show up "out of the ordinary". This was the most exciting news to me. I truly believe this was the most optimistic Dr. Wollman has ever sounded. When the good doctor is optimistic, so is Mom!! I asked him after the appointment in July when Matt would return to clinic. I thought the answer would be that Matt would return every 3 months, but instead the response was every 4 months, pending good results from all the tests. This was the best possible news we could have heard. Our journey in the oncology clinic began with appointments twice a week, then once a week, then every 2 weeks, 3 weeks, once a month, every 6 weeks and now 8 weeks. To be told we will be going only every 4 months was monumental to all of us. What a renewed sense of hope! I asked Bryan and Matthew if they knew what that meant. They both replied, "Yep, it means we have 3 months and 3 weeks not to see you walking around crying!" Okay, so clinic week really stresses me out....but I have a new outlook tonight, one filled with a sense that perhaps this is just going to work out okay!

Today Bryan received a phone call at home from the good doctor himself...Matt had his FISH test repeated last week. Although it usually takes a week to get back the results, Dr. Wollman received them today and wanted us to know that he remains 100% female chromosome cells. Yippee! The lab usually looks at 200 cells, but for some reason they actually checked 400...and all 400 are female. Way to go Kristina for being stubborn and sticking around inside your brother! I asked Kristina what it feels like to be a hero as no one else in the entire world could do what she did for her brother. Her humble reply was, "No different." Have I ever told you how wonderful and amazing it is to be the mother of these children? I am truly blessed!!

So what is in the near future for Matt....my shy, quiet little boy is planning a trip to Kennywood with his friends where he says he is going to ride a roller coaster. I told him he is responsible for cleaning his "soiled" clothes! Bryan has booked the two of them a flight in June to travel to North Caroline where they will stay with some wonderful people, whom I have not even met but God has brought into our lives, and they will be golfing on the Pinehurst Golf Course for a few days. Matt is also hoping to get tickets to go see the US Open here in Oakmont in June to catch a glimpse of the golfing greats. And if we can pull the boy away from the golf course long enough...we'd like to squeeze in a trip to Williamsburg, VA and visits to the grandparents' houses and Aunt Barb's cottage on Lake Ontario. It will be a busy summer, but one that we are all anticipating!

Cancer....relapse...complications....I chose not to think about these things right now. My son is happy, healthy, and cancer-free and that is how I want to enjoy my days with him. Will I continue to worry as every clinic appointment approaches...probably. Every doctor and nurse has told us that feeling will never go away. But for today, I'm thrilled to say I haven't worried about those three things since last Thursday...and it has been a terrific feeling for five days! To everyone who is a mother, may God bless you with healthy and happy children. My heart aches for those friends who have lost their sons and daughters. I do not know how they cope, I can only pray they find peace. Once again, thank you to everyone for your continued support and prayers. You continue to be not only Matthew's Miracles...but also mine! God bless you and your families! Love, Lori

Wednesday, April 25

It seems almost impossible that a month has gone by since my last writing. I, once again, apologize for the delay in updating on Matthew's condition. So much has happened since March 20 that I am certain to forget some important milestone, but here it is....

First of all, many of you have questioned about Matthew's "lost" FISH test from our previous clinic appointment. No, the blood sample was never recovered, and Matthew will have the test repeated mostly likely at our next clinic appointment on Thursday, May 10. I am thinking at this point that I don't even want to know what tests they are running so I don't have to sit and wonder for a week what the results will be. If the FISH test is not repeated at this clinic appointment, it will definitely be drawn at his two-year transplant appointment in July. Yes, it is almost two years since Matthew received his life-saving bone marrow transplant. It still amazes me how many people stop to ask how Matthew is doing and to let me know they are still praying for all of us. I cannot thank you enough! There is always the possibility of a relapse for Matthew, and two years ago with a diagnosis of AML, the prognosis was not a good one. I am happy to say that with each day and clinic visit that goes by, Matthew's chances of relapsing decrease. Will we ever stop worrying...I don't think so. However, I can honestly say that there are many days that I do not even think about cancer until late at night. I haven't reached the day when I haven't thought about it at all, but the hours are getting longer in between each thought, and that is a fantastic feeling! So if you wonder how my son is doing...Matthew is in remission...Matthew is happy...Matthew has many good friends...Matthew does not think about cancer...Matthew is a straight "A" student...Matthew is looking towards a bright and happy future...Matthew is fabulous!

So what has Matt been up to....He was confirmed at a beautiful and touching ceremony March 21. At my last writing, Matthew was not feeling good and thought he was getting a fever. Never doubt Matt! He ended up having a sinus infection and did get a fever the night of his confirmation. As we walked out the door I took his temperature...102.1 After Motrin, he was just fine. We are still struggling with the sinus infection today. Matthew took antibiotics for 38 straight days to fight his sinus infection. An x-ray showed that his sinus cavities were still filled, but he was feeling great so he was taken off the antibiotics. After only five days, Matthew started feeling tired, had a sore throat, and started with the lovely thick, colored mucus again. Needless to say, he is back on antibiotics. We are hoping this will be resolved soon so we do not have to proceed to any other treatments, but I have a feeling an ENT specialist is in our future! Guess we'll wait to see what the good Dr. Wollman has to say about everything on the 10th!

Matthew did travel to Washington DC with his entire 8th grade class last week. Thanks to the wonderful world of cell phones, Matthew was able to check in with us three times a day to let us know he was tired, but have a fantastic time with his friends and teachers. This relieved my fears and anxiety quite a bit, and I was actually able to sleep at night. This was the first time Matt has been away from us since his diagnosis so it was a huge step for all of us. I believe his little brother, Michael, took his absence the hardest. Cassie, his dog, did fairly well by taking over Matt's entire bed, even crawling under the covers to lay her head on his pillow! It was great to see Matthew be independent and leave the comforts of everything he has known for the past two years, but it was fabulous to have him back home!

Matthew will be hitting another milestone next week as Tuesday is his birthday. There was a time, it seems not so long ago, that I had actually worried he might not see another birthday. Matthew was 11 when he was diagnosed with leukemia, and on May 1 he will be 14. Great! Wonderful! I actually call it a MIRACLE!! I wish all of you could personally see him. He is getting so tall...he is now taller than me...he looks great, his smile is contagious, and he just loves to be with his friends and go golfing. He is a real teenager doing real "teenager" stuff! I don't know what tomorrow, next week, or next month holds for any of us but for today...I think things in the Kocher family are pretty amazing! There is always a moment, a word, a phrase, or a person who says something and inspires me to write an update on Matthew. Tonight I have to admit it was on the TV show American Idol. Josh Groban sang my favorite song...."You Raise Me Up". Some times I believe it is my family that raises me up, sometimes it is Matthew's spirit and love of life. Tonight my journal entry is dedicated to all of you...those who continue to pray, to inquire about Matthew, who check his website to see if there is a new posting or new picture...those who continue the journey not only beside us but supporting us with each step we take. I cannot thank you enough! You raise me up! God bless each of you and you families! Love, Lori

Tuesday, March 20

Lost....missing....unsure of whereabouts...these are all words that can be associated with Matthew's FISH test that was taken at the clinic almost two weeks ago. The blood was drawn, the label was attached, the doctor informed us that according to the lab report the test was ordered. After several phone calls to the clinic and their phone call to the laboratory that was to perform the genetic test....the sample is missing. The lab said the last FISH test received at their lab and that they completed was in July 2006. Therefore, somewhere between the exam room and their lab....Matthew's blood sample went missing! Whatever happened, I have decided that I do not want to know what tests are being performed with my son's blood. I will wait for the doctors to tell me results so I am not so anxious waiting....wondering.

Today Matthew came home from school early. He is very tired and continues to take his temperature as he feels he is getting a fever. As of this writing, he is sound asleep and no fever is evident. We will keep a close eye on him through the night and tomorrow as tomorrow night is a huge night for all of us. Matthew is getting confirmed at our church tomorrow evening and has asked his sister, Kristina, to be his sponsor. When it was time to choose a sponsor, the children were told to pick someone that has influenced their lives, has and will continue to be a good role model, has a strong faith, and someone that will continue to be a part of their lives for a long time. Matthew did not even hesitate as to his choice. She has fit all the above criteria, and with the grace of God, she will not only be a part of Matthew life forever but will also live in his body as his healthy cells for the rest of his life. I wish I could go to sleep having a blood result telling me just that, but my daughter has assured me that she is there, as strong as ever, and has no intention of leaving her brother ever! Michael came home from religion class tonight telling us about the miracles Jesus performed thousands of years ago on "a couple of blind men". I have the wonderful opportunity of looking no further than down the hall to see a present-day miracle! Thank you for your continued prayers and positive support. You have no idea how much it means to all of us! God Bless each of you and your families. Love, Lori

Friday, March 16

I just wanted to take a moment to let everyone know that we still do not know the results of Matthew's FISH test that was taken last week. Usually it takes only a week to get the results. For some reason, this time the results have not returned to the hospital so we are still in a "holding pattern". Thank the Lord the nurses in the Oncology Clinic are very patient because I have called three times in the past 24 hours. I was told that either the lab was very busy or his blood sample was possibly "lost". I will make another phone call on Monday to see if the results have been returned to the hospital (this is a genetic test that is sent outside of Children's) and will let all of you know as soon as I have the results. Here's hoping for a wonderful, fantastic, relaxing, and family-fun weekend to all of you! Thanks for the continued prayers! God Bless, Lori

Monday, March 12

Plans for the future...we are once again starting to make them!

Dreams for the future, I've always had them and prayed one day all my children's dreams would come true. Plans are different. For the past two years I have been too afraid to plan for the future. You know the saying....today is a gift and tomorrow is promised to no one. Living with childhood cancer that statistically does not have a good outcome certainly placed a hold on all our "plans" for the future. We approached each day as a new miracle and hoped for an even brighter tomorrow. Things are beginning to change, if even a little, around the Kocher home lately.

March 1 was a momentous day for Matthew and all of us...it was the two year anniversary of Matthew's diagnosis with AML. Matthew was certain to remind all of us about the day, but he approached it not so much as a day to remember what happened but rather a time to celebrate all the miracles we have experienced in the past two years. Matthew wanted to celebrate with his friends at school, so he took in treats to share. Of course, he got to choose the meal and dessert at home that night too!

Matthew returned to the hospital clinic last Thursday, March 8, for his usual eight week check-up. For an entire week prior to this appointment he had been feeling very tired, had a low backache, and had a bad sore throat and cough so his pediatrician placed him on an antibiotic for a sinus infection. He was beginning to feel better when we went to clinic, but remembering two years ago made me very nervous this clinic appointment. I know, I'm nervous every clinic appointment, but when Matthew is ill going into an appointment, it is even worse. I'm very happy to report that Dr. Wollman gave him yet another clean bill of health. His numbers are all within a "normal" range, and blood cells also all looked "normal". A special blood test was ordered that will take a week for the results to return. This is the F.I.S.H. test that shows that Matt is producing Kristina's female donor cells instead of his own. We feel optimistic and confident that Kristina remains strong inside Matthew, and he will be 100% donor. Those results should be in the end of this week. Please say a little prayer that the number is, indeed, 100. I'll be sure to let you know the results when I receive them.

Okay, so what are we "planning" for?? Matthew was given the definite go-ahead to travel with his classmates to Washington, DC. This is a huge leap for Matthew as he hasn't been away from us for several years. We are so proud of him that he wants to go and is also so excited about this trip. Thank the Lord for all his wonderful friends who made the decision for him so easy! Matthew is also planning to participate in Track and Field this year, and Dr. Wollman also gave him the "Okay" for that activity. Going to high school brings along another set of challenges for Matthew...picking which classes he will take next year. We are beginning to "plan" for that next step in his life. Summer vacation...yep, we are planning to take one of those this summer as well. These all seem so simple to think about, but living with cancer can make a person too afraid to make long-range plans. Even though I still realize that the future is promised to no one, it is great to look forward to something and continue to make plans. We don't know what tomorrow holds for any of us, but we can't live in fear and miss out on something spectacular either. Thanks to everyone who continues to remind me of this during those times when I get too nervous to remember it myself. Thank you for all your continued prayers and support throughout the past two years. We are truly blessed to know that we have experienced many miracles in our family. Please know that we continue to hold each of you in our daily prayers. God Bless, and may you have a wonderful and blessed tomorrow! Love, Lori

Saturday, February 18

WHAT CANCER CAN'T DO: Cancer is limited. Cancer can't cripple love...shatter hope...erode faith...destroy peace...kill friendship...destroy memories...silence courage.... Author Unknown

Once again an entire month has flown by and I have not posted an update on Matthew. I do apologize, but you should know by now that no news is great news here at the Kocher home!! Matthew continues to do fabulous in all areas...medically, emotionally, socially, and in all areas of education. We are so happy to see our son thriving, being happy, and continuing to grow. There really isn't too much to report. Matthew had a sinus infection the end of January and was given some antibiotics. He did miss over three days of school, but he returned in full swing and started to feel much better. February brought a nasty cough that I did not like the sound of, but once again his body was able to fight off the virus, and he has not had any problems since. Thank God! I asked the doctor if every little ache, pain, cough, and fever will churn up terrible memories and the sick feeling in my stomach that I always get. She repeated what so many doctors have already told me...yes. Those feelings and memories never go away, but with time they do not come as frequent or with as much intensity.

Matthew informed us a couple of weeks ago that he had signed up to participate in spring track and field. His plan is to run the 400 meter and do the long jump. In order to participate, he needed a physical. We were going to let the physician at the school complete it, but decided it was best to let someone who knows Matt much better do the job. We had an appointment with Dr. Breslin on Thursday afternoon. What an amazing day! First we discovered that Matthew continues to grow and slowly gain weight. He was measured at 5 foot 2 (which I am disputing because he is now supposedly taller than I am!) and finally hit 95 pounds. Then we met a doctor completing his rotations who recognized Matt from his hospitalization in October for Shingles. Dr. Breslin said Matthew looked absolutely fabulous, was progressing beautifully, and then they discussed Matt's recent outside activities...sledding and snowboarding. What a memory for Dr. Breslin as it was March 1, 2005 that Matt was out snowboarding when I called her to say he had pink dots all over his legs and she wanted him seen immediately...don't bother to change clothes. She knew then Matthew had low platelets and could have bled to death in a matter of minutes had he hit his head. That night is a moment we will never forget and one that changed our lives forever...but cancer did not destroy our son, and we are all stronger and closer for the journey we have traveled.

There is a new commercial out for what I believe is Microsoft Windows that talks about having moments in your life when you say "WOW". There have been so many "wows" in my life, and they happen every single day. Some of my "wow" moments of Matthew include watching him out in the snow having a fabulous time and realizing that almost two years ago we didn't know if he would ever be able to snowboard again. "WOW" that doctors and nurses recognize and acknowledge that Matthew looks so fabulous. WOW that our son invited his "group" of friends over to our house Friday night without even asking our permission first and was so thrilled to have everyone here. What a huge step for him. In the past, Matt never even wanted to pick up the phone to call his best friend to come over and play video games. Now he is inviting an entire group and calling the girls on the phone to see if they can come. One step closer to being independent...one step closer to doing the things that most boys his age have been doing for a very long time but Matt had missed out on.

My first sentence of this update stated what Cancer can't do. I have come to realize that there is something Cancer CAN do...Cancer can give you the opportunity to be open to the possibilities of seeing every single little WOW in each day. We all experience those moments...the question is do we take the time to witness and acknowledge them. Our journey with cancer has made us all realize how blessed we have been; that each day is a gift; to not take anything for granted; to cherish our time with each other, with our family, and with our friends; and to appreciate each and every little WOW in our lives. May you each notice the WOW's in your lives today, tomorrow, and forever! Thank you for your continued prayers and support for Matthew. All of you are certainly one huge "WOW" I continue to recognize! God bless each of you! Love, Lori

Friday, January 12, 2007

In three (3) days it will be one and a half years since Matthew's bone marrow transplant. Sometimes I sit and wonder where the time has gone, other times I remember each day and moment spent in the hospital like it was yesterday. We returned to the Oncology Clinic at Children's today for Matthew's check-up. I am very happy to report that my mind should have been listening to my heart all along as Matt's numbers and blood sample looked "great"! Matt usually has the option of getting his finger pricked for the blood sample or having it drawn from his arm. Consistency with Matthew is of the utmost importance. He always opts for the arm. His nurse, MaryEllen, is always a gem and does a great job. It just took forever getting the results back from the lab today. When MaryEllen came in and handed me his results, she said his numbers were "good". Then the resident doctor came in and also said his numbers looked "good". It wasn't until an hour later that Dr. Wollman came in after viewing his blood slide under a microscope and said that Matthew looks "Great". Do you know the difference of those two words to a mother of a child who had cancer? Great always sounds so much better! Of course, Bryan tells me I want "Perfect", but when I have children who are "perfect" in my eyes, "great" bloodwork is enough! Matt's exam went very well, and he is in perfect health with the exception of some residual effects of the shingles. Apparently those nasty nerve endings want to remind him they were there. He seems to either be complaining of a little pain or scratching his side all the time, but in time those effects will disappear. Time...I'm blessed we have more of it!

Matthew was so happy to see two of his Childlife buddies today...Nikki and Dan stopped up in clinic to see him. They are fabulous as always. It is amazing how some people can make others smile all the time. It takes a special person to work in Children's, and we have been blessed to meet so many wonderful people. Matt actually could not wait to get home today from clinic as he had a "social gathering" to get to tonight. Apparently he is quite happy with the group of students he eats lunch with and wants to start spending more time with them outside of school. Finally, the boy is getting a social life! A typical teenager!! Music to my ears!

Okay, so bragging. Matthew competed in his school's National Geography Bee this past week, and we are very proud to announce that he placed 7th. Not too shabby for a guy who missed a year and a half of being in school because of cancer, is supposed to have chemo-brain, and gets nervous getting up in front of other people. Now if we can just get him to escort his sister during her dance recital in June! Kristina is doing a solo point ballet number in June and the teacher asked her to have dance partner during part of her number. She chose Matt. We say he owes her that much...but we'll see just how nervous he gets!!

Friend...the dictionary says it is defined as one who is attached to another by affection or esteem; acquaintance; or one of the same party or group. My definition of a FRIEND: the person who calls me every day to check in to make sure I'm doing okay; the person who meets me for lunch or breakfast during a clinic week because she knows I need the distraction; the person who takes time off of work to go with us to clinic because he knows how nervous and anxious I am waiting for the results; the person who looks me in the eye and promises Matt is going to be okay not because she medically knows that, but because she believes it and knows I need to hear it; the person who is the angel on my shoulder and sends love and prayers just when I need it the most. I have been so blessed to have so many friends in my life. Thank you all for being there not only for Matthew, but for Bryan, Kristina, Michael and me. Cancer has affected all of us, but each day we get up knowing that we have been given another day...another day together...another day to try and make a difference in someone else's life...another day to be a friend to someone else. Thank you my friends and yes, Aunt Barb, clinic on Fridays are just as "lucky" as clinic on Tuesdays!! God bless you all! Love, Lori

Saturday, December 23

Matthew continues to do well, and our Christmas this year is filled with many blessings!  I apologize for not updating sooner.  I hadn't realized how long it has been since my last update on Matthew.  Medically, there is not much to report on our son.  In the past month he had a sore throat and started with a bad cold, but I am thrilled to report that although an antibiotic was prescribed for him, he did not take a single dose and his body was actually able to rebound on its own.  It is odd how something as simple as a cold can send our hearts and minds racing, but Matt has proved that his body is able to fight!  We continue to see little effects of the cancer and all the treatments he received.  He still gets easily tired and once in a while when telling a story we see evidence of his "chemo brain", but the miracle is in the fact that today he is with us, he is healthy, and he is doing fabulous!   

Matthew has been keeping so busy with things "outside of the medical world" which thrills all of us.  Matt was recently inducted into the National Junior Honor Society at his middle school.  We couldn't have been prouder!  All that he has been through, and he still maintains such excellent grades.  He recently performed with his Chorus Ensemble both at a concert and for holiday enjoyment at the airport and local mall.  He was exhausted that night after standing, singing, and dancing all day, but he had a fabulous time...especially since he didn't have to sit in class all day!!  Things have been going much better socially at school for him also.  It seems once he changed lunch tables and starting making more friends, things got much better for him.  Think the possibility of sitting with not only boys but also now six girls has something to do with it??!!  He actually also attended his first boy/girl party last week and actually wanted to go without us begging him to go!  It is just wonderful to see him having fun and wanting to spend more time with his friends.   

Matt received his second round of immunizations on Thursday.  He was happy to receive four different meds in only three shots.  He once again took them like a trooper and did very well.  Although he hates the thoughts of needles, he is handling the stress much better prior to the doctor visits.  He is officially free of immunizations until September.  Matt was thrilled to hear that! 

As the holidays are knocking at my door, I sit and think about everything our family has been through the past two years.  When I hear the song by Kenny Rodgers in which he asks, "Mary did you know" I find myself asking that same question, but answering that I wouldn't want to know....that my baby boy would travel the road of a rare childhood cancer that would require his sister to potentially save his life...that my baby boy would have to endure so much pain in his life and still not know the final outcome for possibly years to come...that my baby boy would provide me with such pride and joy in all that he has accomplished and with the positive attitude that he approaches everything in his life.  I am so abundantly blessed, that I often sit and cry for everything I have to be thankful for...my husband, children, family, friends, and the countless number of people who have prayed for my son and our family, sent well-wishes, contributions for Matt's foundation, meals, but most of all love and compassion.   I cannot thank you enough for everything that everyone has done for our family.  They say it takes a community to raise a child...it took a community to save my child and help us walk our journey.  God Bless each of you this Christmas season.  May you enter 2007 with health, happiness, and an abundance of family and friends to share in your joys and your sorrows.  Know that we will be praying for each of you, as you are ALL a part of our family.  Love, Lori 

Saturday, November 18

"We may not have it all together, but TOGETHER, we have it ALL."

I apologize for not updating sooner. Things seem to be moving at a faster pace lately, and I can't seem to keep up. The days are flying by, it is the middle of November, and I can't believe we will be celebrating Thanksgiving this week. As I wrote in the above quote, I may not have it all together, but I feel so blessed knowing that we are all together! So much has happened since my last writing...

Matthew continues to do well medically. However, it was a very hard adjustment for him to return to school after being off with the Shingles. After my last writing, the following week Matthew ended up with a bad sinus infection. His pediatrician placed him on another heavy dose of antibiotics. The following week, he was finally permitted to receive his flu shot, and he was thrilled (ha ha). Matt was able to go trick-or-treating on Halloween, but he was so tired from the infection and Shingles that he only made it to a couple of streets this year. Quite all right...little brother, Michael, gathered enough treats for everyone in the house!

Matthew returned to clinic this past Thursday for his check-up. Dr. Wollman was pleased to announce that all of Matt's numbers look good, all within the normal range, and his blood slide showed all normal-looking cells. We were delighted and ecstatic to hear that news. After his physical, Matthew asked his only question of the day....could he not return to clinic for 8 weeks. Dr. Wollman smiled and told him that was fine, so we will return to Children's the second week of January. Happy holidays to everyone in Children's!! Congratulations to Dr. Wollman who received an award for being the No. 1 doctor at Children's Hospital this past year. We always knew we had a great doctor, we are so pleased that everyone else knows it also!

We were concerned that Matt was becoming depressed as he actually started to withdraw from friends and didn't want to go to school. I am happy to report that he is doing much better today. We actually all went to a counselor who specializes in children recovering and dealing with cancer. It was a very insightful meeting, and it was there that Matthew finally verbalized his realization that he could have died when he was in the hospital last year. I believe he had suppressed all these emotions and feelings for so long, and after the hospitalization for Shingles it was finally brought to the surface of his memory. It has been difficult for Matt to handle all these thoughts, emotions, and the fear of "what if", but he continues to handle it with determination, strength, and faith. Although the return of cancer is frightening to think of, Matthew has assured us that he would once again face the battle in order to win the war.

As for Matthew's other "cancer" friends, Nikki just celebrated her 15th birthday and one-year anniversary from diagnosis with a huge party. We were able to attend and had a wonderful time watching Nikki laugh and have fun. It was also wonderful to meet so many people that continue to pray and support Matthew and our family. We have always known that we did not take this journey alone, and it is such a blessing to meet those who have walked with us. Thank you! As for Jenna, she continues to do well since her transplant but is showing some possible signs of graft-vs-host disease. We are hoping and praying that the doctors get everything under control soon and Jenna is able to return to school in the spring just as Matthew did. Michael and Victor are doing fabulous and both back in school full-time and busy with extra-curricular activities. We are sorry to say that Katie's heroic journey with cancer ended last Sunday evening. Katie passed away at home with her family by her side, and we were blessed to witness a "Celebration of Life" for Katie on Thursday evening. We do not understand why these children must endure such pain and suffering. It is a greater plan than we can understand, but one I will be sure to ask some day! Please continue to keep all of these children, their families, and the wonderful doctors and nurses who care for them every single day in your prayers. As anyone with cancer knows, it is a terrible disease that not only affects the person who has it, but everyone who touches their lives. We thank you for touching ours in such a positive way. God bless you and your families, and know that we are very thankful for ALL of you this Thanksgiving! Love, Lori

Friday, October 27 

It has been one week since Matthew was discharged from the hospital.  Looking back, the week went so fast that I am not ready for him to return to school, but we are so happy to report that Matthew was given the "okay" to do just that on Monday.   

Matthew spent the past week getting adjusted to "living at home with Shingles".  He jokes that he has the "Shutters", so it is good to see that his sense of humor in all of this is not lost.  Matthew was not able to return to school this past week for various reasons...but he was not contagious.  First, he was on a drug called Acyclovir.  This is a drug that is very hard on the kidneys, and Matthew was required to drink a ton of liquids.  For the first year after transplant Matt was on 400 mg of Acyclovir a day. Coming home from the hospital this time, Matt was on 4,000 mg.  We had to be sure he was taking in enough fluids in order to flush the drug from his kidneys and liver.  So far, all things are fine.  The pain has been managed the entire time we have been home, and he is slowly being tapered off the medication.  This is also a great thing because it was causing Matthew to lose his memory.  He could not concentrate nor remember some things we had just told him five minutes earlier.  In some instances, it was pretty funny because we could say things to him that he wouldn't remember.  But Matt found it annoying because he would be looking for a TV show to watch and while he was "flipping" through the channels, he couldn't remember what he wanted to watch.  Imagine sitting in school with a mind like that!  The biggest problem for Matt this week has been the itch.  We have been trying to control it with Benedryl and Calamine Lotion, but sometimes he just has to scratch.  All in all, this has been a pretty good week for him. 

We returned to clinic yesterday (Thursday).  This was another day which caused a panic attack for me.  When the resident doctor showed me the blood counts for Matt, I immediately panicked.  The great news...Matthew's hemoglobin was steady at 13.0, platelets rose from 128,000 to 264,000 (he has never been that high), but the number that scared me was his white count of 15.8  (Matt always lives between 4.0 and 6.0)  A high white count could indicate a relapse, so once again the fear rose within.  I attempted to remain calm while we waited for Dr. Wollman.  He came in with the great news that Matthew's blood smear under the microscope was perfect.  No leukemia blasts and all perfectly shaped cells.  We questioned why the high white count...Matthew's marrow took such a hit from the shingles and it took a dive.  Now the marrow is recovering and pushing all the cells out and Matthew's blood stream is overwhelmed with white cells.  Dr. Wollman wants to see Matt back in two weeks just to make sure he is continuing to do well from the shingles, and we have been warned that his marrow will probably take a drop again as it begins to stabilize.  Of course, I'm nervous thinking the worst...but I have to trust in the knowledge of our doctor and have faith in our God that Matthew is just recovering from the heavy hit he took to his bone marrow.  We are blessed to live so close to Children's Hospital and to have a knowledgeable doctor who doesn't get excited to see numbers drop and rise so quickly.  Many doctors who saw Matt in the hospital and did not know anything about Oncology got nervous and suspicious as to his blood counts.  Dr. Wollman has always remained positive through this entire ordeal...so must we. 

Matthew was privileged to have Ms. Katie Scott come to the house on Wednesday after school to try and get him caught up on all his work.  Matthew was so "thrilled" to see all the homework and tests he has been missing.  After three long hours Matt was ready to be lost with Gilligan on the island, but we believe he is much better off as Ms. Scott did a great job getting him back on track and helping with Geometry so he isn't so far behind on Monday when he returns to school.  I know Matt is nervous about returning.  He was just fitting in and feeling "normal" when he had to miss 12 days of school.  It will be difficult for him to walk back in through the doors, but I know he will handle himself as he always does...nervous at first but determined to meet his fears.  Our one fear for him is if he was stressed during the first quarter of school and the shingles came out, what will happen over the next few months and all through high school.  Again, these are things we cannot be consumed with.  We can only pray that Matt will learn to relax and face each day with courage, strength, and humor, as he faces every challenge. 

Thank you, again, for your continued support and prayers over the past two weeks.  I know looking back that those nights when I stayed awake in the hospital to try and get his fever down, check his heart monitor, or just watch him breathe that it was a power greater than me that enabled me to remain calm and continue on.  I also know that it was the power of prayer that helped Matthew break those fevers and not allow the shingles to enter into his lungs or heart which would have caused so many more complications.  We cannot thank you enough.  Please know you are continually thought of and prayed for by our family.  God Bless each of you tonight and always.  Love, Lori 

Friday, October 20 

White Count - 6.1; Hemoglobin - 13.0; Platelets - 128,000

Number of kisses between a dog and his boy....infinite!! 

Matthew is home and doing fabulous!  The counts came in early this morning that Matthew's platelets had, in fact, came up from 111,000 to 128,000.  They will continue to slowly rise while his hemoglobin will slowly lower the doctor told us today, but Matt was well enough to be released from the hospital.  Dr. Wollman told him he could not go to school until he was re-evaluated at the end of next week, but Matthew wanted to know if he could go golfing tomorrow.  Hey, golfing is outside with no human contact and the weather is supposed to be great.  You can't blame a kid for trying!! 

I just wanted everyone to know that Matthew is home, pain-free, a little itchy, but happy to be back in his own bed with his dog, and eating his mother's cooking.  He remains on an antibiotic specifically created for chickenpox and shingles, a medication that shuts down the nerve endings so he doesn't feel the pain, and an anti-nausea drug which he hasn't needed up to this point.  He has been taking Benedryl for the itching, and it hasn't been unbearable yet.  Some of the blisters are already beginning to crust over, so I suppose that is a good sign.  Matt is stressing out a little about the amount of school he will be missing and how far behind in the work he will be, but we are trying to work out something with some of his teachers to get him caught up before he returns to school.  It is just such a blessing that he is out of the hospital, happy and healthy back and home, and still in remission!  Isn't God awesome!   

Once again, thank you for continuing on the journey with us this past week.  There were times I didn't think I would be able to take another step, but your support and prayers enabled us to continue on to a brighter tomorrow.  Words cannot thank you enough.  Enjoy your weekend.  I know we will!  God Bless.  Love, Lori 

Thursday, October 19 

Prayers are being answered, and Matthew is feeling so much better! 

Yesterday upon my arrival at Children's Hospital, Dr. Wollman examined Matthew and tried to calm my fears when he said Matthew was taking the right turn in his recovery from the shingles, and he truly believes the drop in platelets is not a sign of the leukemia relapse but rather the havoc the shingles of played on his bone marrow.  Apparently, shingles is a suppressing bone marrow virus.  Taking into account that Matthew's bone marrow is already somewhat suppressed and has not completely recovered from the transplant, it was imperative that we place Matthew on the correct IV antibiotic when we did.  The shingles lie dormant in the nerve endings of individuals who have had chicken pox.  With Matthew, they not only appeared in one quadrant of his body as it normally would in a "normal" person, but it also entered his blood stream and traveled to other parts of his body.  Thankfully, and I believe miraculously, it did not travel to the liver, lungs, or heart as it could have.  Being a virus and not bacteria, it would have been very difficult to treat had it entered those organs.  Dr. Wollman assured us the platelet drop was expected as is the impending drop of white cells and hemoglobin.  The bone marrow has taken a tough hit and will need time to recover.  So apparently when I see Matthew's lab report in a month and are shocked to see such low numbers, I'm not to worry about a relapse...it's all normal!  As far as I'm concerned, there is nothing "normal" about a transplant nor my son.  He is unique and special in every way.   

On to further great news, Matthew slept amazingly well last night with no fevers...just as the good doctor said he would.  Matthew is struggling with a few issues of dizziness, nausea, pain, and itchiness, but the fevers are gone, the pain is reduced, and the shingles are starting to heal.  Praise God for every prayer said in his name and every miracle provided to our son once again!  Dr. Wollman came in today and was impressed with the way Matt looked.  He told him he looked great.  Matthew in turn replied that he felt great but would feel even better if the doctor would let him get out of there and go home.  He wants to see his dog, sleep in his own bed, eat his mother's cooking, and get back to golfing.  (Notice he didn't say a word about school!)  I guess the "vacation" is over.  So much for that four star hotel we were hoping for!  Matthew has been confined to his room and is totally bored, but the great news is that Dr. Wollman laughed at Matthew's sarcasm logical thinking and said that Matt can come home tomorrow!! 

Matt is to have blood work at 4:00 am this morning and if all looks good, he should be discharged by noon.  He will be coming home on antibiotics, pain medication, and anti-nausea drugs.  We are sure he is going to be weak from lying in bed for so many days, but he will have more rooms to walk around and better food to eat!  Once again, we thank you all for the continued support and prayers.  The doctors are so amazed by all the e-mail cards he has received and by how well he has handled all this, his positive outlook, and his humor.  I'd say my son is amazing...but I truly believe he was given the gift of miracles...miracles provided by so many as well as the Great Physician Himself.  Once again we have met so many wonderful people at Children's.  Doctors and nurses who are dedicated to helping heal children both physically and emotionally.  It was great to see our Child Life friends Dan and Nikki, but it is time once again to return to our lives here at home and become a family again.  We pray his numbers tomorrow will be fantastic and no indication of leukemia relapse.  Until I see the platelet numbers and no blasts present, I will remain cautious.  I will be sure to let everyone know tomorrow whether Matt made it home to his dog or remains in the hospital another day...but I'm confident we will be home enjoying the company of each other and knowing the blessings provided to us once again.  Words cannot express how much we appreciate all your support and prayers.  You will never be forgotten in our hearts, minds, and prayers.  God bless each of you and your families!  Love, Lori 

Wednesday, October 18 

I just wanted everyone to know that I spoke with Bryan this morning.  Matt did run another fever during the night.  It took from 3 am until almost 8 to get his fever that was almost 103 down to 99, but at least it went down.  The good news (at least we think it is good news) is that they took more labs at 3 am.  Although his white count is dropping, his platelets actually went up on their own.  They were 71,000, this morning 111,000.  To us, that is huge.  We have not yet spoken to the doctors, but our understanding is that when cancer returns, the platelets continue to go down, not up.  Therefore, we are hoping and continuing to pray that the numbers continue to climb and the doctors will reassure us later today that Matthew's condition is NOT cancer related.   

Please continue with those prayers.  They have provided hope for us this morning when I didn't know last night what today would bring.  I promise to let you know what the doctors say when we find out any concrete news.  I thank you, from the bottom of my heart, for the flood of prayers, phone calls, e-mails, and support.  Once again, you are proving how many miracles there are each and every day.  We just have to open ourselves up to seeing and acknowledging them!  Another bump in the road...perhaps this was a detour, but Matthew WILL find his way back on the right path to continue his journey to a long and healthy life.  We trust God will bring him to that destination.  God Bless you and have a great day!  Love, Lori 

Tuesday, October 17, 2006 

It is with a very heavy heart and my find filled with confusion as I write to you tonight to explain Matthew's condition.  Up until an hour ago, we were concerned, but now we feel overwhelmed with anxiety.  Let me begin... 

Matthew does have a confirmed case of Shingles.  In a normal "healthy" person, the shingles are very painful, can cause fevers, manifest into lesions and boils, then apparently disappear as strangely as they appeared.  In a transplant patient such as Matt, there is much concern for how the body will handle the virus.  There is always the possibility that the shingles will appear not only on the skin but also show up in the liver, lungs, heart, etc.  We have no indication that those things are happening to Matthew.  What has concerned us up to this point is his high fevers.  Last night while I stayed with him, he ran a fever of 104.9 until we were finally able to break the fever using ice packs on his body.  He is quite the trooper and did not even complain when the nurse had to prick him again in order to get blood cultures.  Because of the high fevers and his elevated heart rate, Matthew was placed on a heart monitor during the night.  This morning it was decided his heart is doing well, and the monitor was removed.  Praise God for one good thing!  Today Matthew continued to run high fevers.  Dr. Wollman relieved our fears this morning telling us he looks good and that fevers are common with shingles.   

Tonight Matthew ran another high fever that Tylenol and Motrin seem to be unable to bring down quickly.  Bryan had to place cold packs on him again in order to lower the fever.  He has been resting comfortably with the help of two pain killers, the antibiotic, and medication to take away the itch he has developed.  The Shingles are now beginning to break out in different areas of his body...legs, arms, and face.  Although this is not typical of a normal Shingles case, Matt is anything but typical.  Due to the fever tonight, the doctors ordered yet another blood culture.  And yes, another prick had to be completed and this time in his hand.  Bryan said he once again was a pillar of strength.   

On to the frightening part.  When the lab results finally came in tonight from the blood they sampled earlier today, we were informed that his platelets have taken a dramatic drop.  Platelets are the necessary components needed for the clotting of the blood.  When a person relapses, they can be the first to go.  Matthew's platelets on Thursday had dropped from 209,000 to 189,000.  No cause for concern.  Sunday they dropped to 178,000.  Again, we were told with the virus this was normal.  Tonight Bryan was given the number of 71,000.  Dramatic and frightening drop.  Dr. Wollman was called and relayed the message to try not to be concerned as platelets are the first thing to be "eaten up" when there is a high fever, and Matt has had a high fever for the past few days.  He said we would discuss things further tomorrow morning.  I am not sure what this means.  Will a bone marrow biopsy by in his near future to rule out a relapse?  So far no blasts have shown up in his bloodstream, but we do not know what the marrow is producing.  We can only pray for what we hope for.  I am attempting to be very brave and optimistic tonight, but my head and heart are overcome with fear, depression, and thoughts of grim news for my son.  We are praying that the drop in platelets is truly due to the shingles and fever, but have no way of knowing for sure.  I am praying we will know more in the morning.   

I ask you once again, please pray for our son.  The power of prayer is so strong, evidenced by how well he has done since our diagnosis March 1, 2005.  Matthew is trying to remain optimistic, upbeat, and strong, but inside I know he is as scared as Bryan and I are tonight.  I pray my next writing will be great news of his rising platelets, no evidence of leukemia cells, and of our impending return home with our Matthew.  Thank you for continuing the journey with us tonight, as always, and for holding us up when we feel we can no longer support ourselves.  God Bless you and your family tonight.  And please, tonight, give that one extra kiss to someone you don't think you could live without.  Love, Lori 

Sunday, October 15

15 months post-transplant

Matthew was admitted to the hospital this evening...so much for a "new birthday" celebration! We feel very confident this is not cancer-related, and Matthew remains in remission. In fact, as of tonight, his counts were all very good and in the "normal" range.

After missing school two days last week and being seen by two doctors, we finally had a diagnosis from two very intelligent friends of ours this afternoon...Matthew has Shingles. Matthew began having a lot of pain Wednesday night. Thursday morning, being very afraid that the pain was coming from his spleen, we took him in to the Oncology Clinic at Children's. After a blood test, we were quite relieved and told it was possibly a muscle pull. After no sleep and severe pain that night, I took him to the pediatrician on Friday. She was quite concerned that Matt might be possibly relapsing with his cancer and discussed his blood counts in detail with me. She then ordered an x-ray of his ribs. That afternoon we were told the x-rays were fine and Matt probably had a condition called Costochondritis...basically his cartilage between the ribs were inflamed. No sleep again Friday night, so another call to the pediatrician on Saturday. We were told to continued hot and cold compresses and alternate Motrin and Tylenol around the clock. Again, no sleep last night. This afternoon we discovered some blister-like marks around the rib area where Matthew had been complaining of pain. After discussing the situation with Kristina's boyfriend's mother, she asked if we had considered Shingles as a possibility. It was as if the light-bulb went on. We asked another friend who is a nurse to take a look at him, and she agreed it was Shingles. A simple call to the hospital, and we were told to get him in immediately. Shingles to a normal, healthy individual is not life-threatening. To a transplant patient there could be serious complications and consequences.

Okay, the emotional part finally hit us as we walked in to the ER at Children's. The last time we entered those doors was Tuesday, March 1, 2005...date of diagnosis. I know Matthew was upset and hated the thoughts of being there, but walking past the stairwell that Bryan and I were told about Matthew's leukemia put me into a full-blown panic attack. Leave it to my son who saw me in tears and having difficulty catching my breath to tell me that he was fine and it wasn't cancer this time. God Bless my young man who is stronger and more faithful than I am. God must have great things in store for him!

An IV was started on Matthew, and he will receive an IV antibiotic for the shingles as well as two different pain medications. Because the antibiotic is hard on the kidneys, they will also run IV fluids to flush him out. We were told Matthew could remain in the hospital anywhere from two days to a week. Other than that, we do not know anything else until the doctors come to see him tomorrow morning. We are hoping he will react to the antibiotics and pain medication and be home in the two days...or by Wednesday morning as Matthew has told us!

This has been an emotional few days for us and a drain on the entire family. Matt's siblings (both Kristina and Michael) are upset that we are not home as a family. This is stirring up a lot of emotions from a period in our life we would just as much forget. But, this is one of those potholes along our journey that we have hit and must deal with. We will continue to fight and forge ahead. Blessed with so many supporters and "miracles" of Matthew's, we will once again come home stronger than before. As we learn anything new, I will be sure to keep you posted. In the meantime, Matthew is on 8 South this time...he has advanced to the "teen" side of things and close enough to the oncology doctors and nurses yet on the other side of the dreaded "cancer doors". He will be able to walk down the hall to see all his great nurses, doctors, and friends and is on the wing where one of his favorite Child Life Specialists (Dan, the Man) works. Thank you, in advance, for all your healing prayers and constant support. We don't know what we would do without each of you! God Bless! Love, Lori

Wednesday, October 4, 2006

"We remain. Safe in the hallowed quiets of the past." James Russell Lowell

Once again I must apologize for the numerous people who continue to check Matthew's website looking for news on his condition, and there has been no update for over a month. Someone just said to me this morning that she was assuming that "No news was good news" and that is exactly how we have been doing. Very good!

As of my last writing, Matthew has met many challenges and continued his journey in his "new" life. School began, and with it a little apprehension on Matthew's part. He was so excited to see his old friends and be a part of the "group", yet he had to adjust to attending school all day and then coming home to complete homework assignments and prepare for tests. This was a huge obstacle for him as he hadn't been in school for an entire day since February 2005. Eighteen months to be away from a daily routine is a lot for anyone, but now he is glad he is back in school and back with his friends. Life seems to be returning to "normal" for him again. The start of school seemed to be harder on me, his mother, more than anyone. In 16 years, this was the first time that I have been home alone all day long. I am beginning to adjust, but still feel quite lonely some days. Having my children home with me has always made me the happiest.

As for illnesses, Matthew has already missed two days of school but has rebounded from the illnesses as well as we had hoped. Except for sore throats and sinus problems, Matthew has been the perfect picture of health. There are days when he is extremely tired, looks pale, or complains of an ache or pain. Of course those are the days that I get a knot in my stomach and cannot sleep, but he wakes up the next morning and continues on with his cheerful and smiling face. We do not know what this winter has in store for Matt, but we continue to have hope and faith that he will feel great and fight any infections that come his way.

Matthew completed a huge milestone on September 22 as that was the first time since March 1, 2005 (date of diagnosis) that he returned for a physical examination by his pediatrician, Dr. Janet Breslin. I must say, if you are ever looking for a knowledgeable, compassionate, and caring doctor, she is it. It was very emotional for me to take Matthew back to her office as the last time I had him to see her it was the most devastating day of my life. However, this visit was amazing. She spoke with Matthew, examined him, and relieved my fears by stating how amazing he looked for a person who completed a bone marrow transplant one year ago. She felt he was extremely healthy and a miracle. Of course, I've always known the miracle part, but it was great to hear her say how healthy he was. Matthew did not enjoy the rest of the appointment. That visit marked the continuation of his "new" life in the medical field. Matt received 5 immunizations that day. He handled all of them amazingly well, and the only side-effect we saw was a couple of sore arms for a few days. We were so proud of him. He will return again this month for his flu shot and then again in November for 4 more immunizations and six months later will receive 5 or 6 more. My heart ached watching all my children as infants receive so many shots, but it is a little different seeing the terror on your teenager's face as the nurse walks in with five needles. I know in the coming months he will meet the challenge as he always does. This is just one more step necessary to completing his journey.

As for an update on Matthew's friends...Jenna is home from her transplant and doing wonderfully. She has had no signs of Graft-vs-Host Disease and is being reduced on many of her medications. Katie, however, requires an outpouring of prayers. Katie has been in the hospital continuously since May. She has been unable to go home and the chemotherapy drugs have been unable to get her into remission. The oncologists have used the last of the drugs that can be used on her, and we are waiting for the results. Katie suffers from many medical complications and currently is undergoing a procedure to determine a spot on her lung. Katie has asked the best question anyone could ask, "When is enough, enough." Please keep Katie is your continued prayers. We know firsthand the power of prayer and know the outpouring of love for Matthew from all his "miracles" will continue to hold Matt, as well as his friends, in continued support. Thank you again for checking in on Matthew and our family, for supporting us along our journey, and blessing us with your friendship and love. May God bless you with health, comfort, support, healing, and his unending love. Love, Lori

Thursday, August 24 

 

"Follow your heart and not your head."

 

They say when you are in love that you are to follow your heart.  I've learned this past year that this statement holds true when faced with the dreaded disease of cancer.  I had to follow my heart in making so many decisions during Matthew's treatment and not listen to my fears.  Anyone who knows me also knows that the week of clinic is not a good week for me.  My fears overtake what my heart knows, and I allow doubt to enter in.  I worry what the numbers will be and if the leukemia will show up on the blood slide.  I am very happy to report that today proved once again that I need to trust what my heart is telling me and know that God is taking care of our son, as Matthew's clinic appointment went very well.

 

Matthew's ANC, white counts, hemoglobin, and platelets are all within the normal range.  He looks good, feels good, and the doctors say his blood IS good.  So good, in fact, that they have given him the go-ahead to begin his immunization shots.  He is not permitted to have any "live" immunizations, but he will begin with his shots next month.  He is definitely not looking forward to the needles as he has a terrible fear of them, but I know he will meet the challenge as he always does...worrying for days before and then handling the situation with courage.  Dr. Wollman told him that he would see Matthew back in 6 weeks.  Matthew did as he always does...counter-offered with an 8 week visit instead.  Dr. Wollman agreed, and we will return to clinic October 24.  We were also told that if he becomes ill or starts a fever we can simply call his pediatrician.  If she feels he needs to be seen by the oncologist, he will be called.  I guess we are just one more step closer to a "normal" life again.  It will still be a long journey until we all relax and face each sniffle, ache, and pain with no more than a sideways glance, but we are taking that journey one step at a time and will eventually reach the destination. 

 

Thank you, once again, for the continued support, prayers, and phone calls.  I don't think you truly understand how much we appreciate everything everyone is doing for us.  Just knowing how many times Matthew's website is visited lets us know that you are still interested, concerned, and praying.  Matthew is truly blessed to have so many miracles in his life.  God bless each of you!  Love, Lori