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Thursday, July 3, 2008 8:27 AM CDT Well hello to all.
We just got thrown into a bit of stress for the last couple of weeks. Sloan Kettering called about Matt's heart. They were concerned about the EKG that he had. They recommended we go see a cardiologist because of a symptom called “hypertrophy” (hardening of his artery). If anyone can remember that sunken feeling when something comes back that you dread, then you can understand our feelings. Debbie and I have been doing really well with everything and now to go back to this was like starting over. Now the good news, we met with the staff at Stanford and Central Coast Children’s Hospital. They tested Matt again and concluded that the test Sloan Kettering did was off because Matt was sick at the time. In short, Matt is once again a normal 7 year old and Debbie and I are once again normal parents. Thank the Lord.
This is all for now but promise to update often. I guess the scares that we experience in life are sometime meant to put us on the correct track.
Thom and Debbie.
Sunday, April 20, 2008 6:57 AM CDT Hello all.
Well, we flew into St. Louis friday night. I was hoping to go to the zoo but unfortunately the family was sick. Thom stayed in bed, and Sierra and Matt both threw up. I am praying that everyone starts feeling better today. This morning we are flying to NY and will be staying at the Ronald Mc Donald house for the week. Our appointments are scheduled Wed. April 24th(Matt's scary appointment) and thursday. We are trying a lidocaine patch that worked at Stanford for starting Matt's IV and I am praying that it works!
Of coarse, before any follow-up visit the symptoms appear. For the last 3 months Matt has had lower back pain-usually when he walks, runs or rides a bike but he has also complained of it when he wakes up. Then 2 days ago he started limping-saying his foot hurt and he is still limping today. For those of you that don't know-one of our greatest fears is relapse and there are 2 ways we can relapse-locally in the abdomen which is the most common or in the bones. I sometimes think that the 10 years (that we wait to say that he is cured) is a blessing in disguise(sp). I am constantly reminded of our reliance on GOD, our appreciation for our daily life, and how trivial most things in life are. I love my son and will continue to pray for minimal side effects of treatment and a full life for him. I cry at the thought of losing him but again am reminded of my test of faith. When I was at my weakest, Matt was at his lowest, and it was at that moment that I completely surrendered. I turned everything over to God. I believe that miracles happen when we put our full faith into him. Thankfully God granted us our miracle and is blessing us daily with his child, Matthew.
Thank you for your continued prayers for Matt.
With love,
Debbie
Monday, August 13, 2007 12:46 AM CDT Hello all!
Its been forever since we have updated Matt's site. All has been good and busy.
We just got back from Memorial Sloan Kettering and thankfully Matt is doing great. Its been 3 1/2 years since he finished his treatment. It is so refreshing to be dealing with the trivial side effects of his treatment: hearing, thyroid, and kidney issues. To any normal family these issues would be Huge but to us they are minor in comparison to hospital life Matt once lived. we will always thank GOD for Matt's life daily.
Matt will be 7 in October and he is starting Second grade in a few weeks. He is generally a sweet, energetic kid who is always smiling. He loves his sister(Sierra/9months old)and is good at harrassing her!
On our way back from NY we drove a motor home from Maryland to CA. The trip wasn't easy but it was soooo refreshing to spend the 2 1/2 weeks together. After everything we have been through we really appreciate our family time together!
This September we are going to be living in Cayucos and in the motor home-it should be fun and interesting!!
I will try to write more later.
With thanks and gratitude for all the continued prayers,
Debbie
Tuesday, April 25, 2006 11:08 PM CDT Dear friends and family,
I decided to write this because every once in a while I look at Debbies email and she still recieves all the N-blast lists. I could not read them during and shortly after his treatment. It is a little easier to read them now but it always brings tears. For those who read this and are still in treatment, my prayer go out for you. There is nothing out there to compare what you are going thru.
No news is good news! It has been a wonderful 6 months since we wrote last. The tests were successful last December at Sloan Kettering. Very cold. Dr Cheung thankfully recommended cutting back on all the tests. We should only do a MRI now. No more nuclear tests. Our next test will be in June. Either Sloan or Packard. We never did make it to Disney world either. Just a little to much for us at the time.
We got to go skiing a few times this winter. Matt is doing very well especially with his friend Spencer. The two are very competative.
School has also started for Matt. Debbie is doing a suedo home school program. 1/2 home and 1/2 school. It is called San Luis Classical. He is doing well and developing more friends.
Joyce D'Angiolillo, Susan Armenio, Kaitlyn, Ellen Hanson and Jerri and others, I do not know if we have thanked you enough for your support and care. We do read your messages and apprieciate all the kind words. I will try to get better about this Journal.
Love Thom
husband to Debbie and Matt's lucky father.
Thursday, December 1, 2005 9:47 AM CST Hello!!
We are just getting ready to go to New York for our scans and doctor visits. We will probably be leaving around Dec. 8 or so and our first test starts on Tuesday Dec. 13th. Matt is looking forward to the sidewalk sale at Ronald Mc Donald. I sure hope they have one in the winter!
Matt has been doing great! He had a great birthday party-so now he is 5. Shortly after his birthday he started reading and he rode his bike on the beach without training wheels! He is so proud of himself-its very sweet.
If you get time and are interested PLEASE check out the Lunch for Life website: www.lunchforlife.org. Matt's giving code is 14162. You can give up your lunch for one day to raise money for Neuroblastoma Research! Each $5 donation also gives the child an ornament on his/her giving tree. The giving code (14162) helps Matt get bonus ornaments. Each ornament gives him a chance to win the Disney trip. What's so incredible about Lunch for Life is that 100% of your donation goes to research. Please donate and help us find a cure. We desperately need new treatments for the kids who have relapsed and have no survival rate. We still have 8 years to go to claim that we are cured and there isn't a day that goes by that I don't think about relapse. Thanks you!!!
Have a great holiday!!
With love, Debbie
Monday, October 24, 2005 8:54 PM CDT
Hello wonderful family and friends!
We sure had a great summer but where did it go?? Time flies. All is going great. Matt hasn't had any kidney issues and as far as I know his thyroid seems to be doing well on his new med. There still isn't a day that goes by that I don't realize how blessed we are to still have Matt with us. Its been a little over 2 years (Aug. 14th was the big 2 year mark)-and I am so thankful for this time. I am in touch with a internet group of parents with kids with neuroblastoma and I hear about all their kids and how common relapse and death are-its scary and very real. Its difficult but necessary to understand how precious and temporary this life is. I just continue to pray that Matt will make it to that 10 year mark when we can say that he is cured.
We will be going to Memorial Sloan Kettering Cancer Center in NY the week of December 12th for an MIBG (nuclear med) test, CT, blood work, and a neuropsyche evaluation. We will also probably also get a 2nd opinion from the pediatric nephrologist (kidney dr.) This will be the first time that we will be in NY during the winter-it should be interesting! Skating in Central Park sounds like fun! After Matt's torture (IV, and scans) we are thinking of maybe taking a side trip to Florida to see Disney World??? We will see.
Matt had his 5th birthday on October 18th. We had a party on the beach on Oct. 8th-just like the last 2 birthdays and exactly what he asked for. He had a blast! After the party he had 7 kids stay for a slumber party-almost as much fun as the party!! If Matt had it his way we would always have family and friends staying at our house.
Matt is getting excited for Halloween-He is going to be a dinosaur. We have been making Halloween decorations for the last month! This week will be a lot of fun.
So, all is going well for us. We hope and pray that you and your family are doing as well! Thanks for continuing to pray for Matt!!
With love, Debbie
Tuesday, August 23, 2005 4:09 AM CDT Hello loved ones.
We are having a great summer and gearing up for fall. We have started some fun school activities at home. Matt is doing great and loving it! Swim lessons start again tomorrow and next week soccer starts too. Oh, how awesome is it to be able to have a somewhat normal life!!
Health wise Matt is doing well. We have added synthroid to his daily medications but overall this is trivial. Our next scans and tests are in December and we will be again traveling to N.Y. Winter in NY? Can a Californian survive an East Coast winter? We will see! How fun will it be to Ice Skate outside!!
While we are rejoicing every day that Matt is doing so well-I am torn. So many of our Neuroblastoma family are not doing well. We still have no cure and it kills me to hear what these precious children and their families have to go through. Please, please pray for these families and their children.
One specific family that has been such an inspiration for so many of us is the Thomas family. Their beautiful girl, Christi, has been fighting neuroblastoma for so long and has been able live with the disease and keep it at bay or at least stable for quite some time until now. She has just started a new treatment and is in desperate need of prayers. This treatment has to work now! There is no time to spare. Her website is www.christithomas.com
Be thankful for the day. When you go through what we have gone through nothing else matters.
With love, Debbie
Wednesday, August 3, 2005 0:12 AM CDT Hello all!
We are having an incredible summer. Everyday is a blast!
We just came back from our favorite hotel pool. Its so relaxing to swim in the evening! We are having a lot of fun with our niece Gabrielle. She is so great with Matt. Matt loves having a playmate around. Gab has been able to spend quite a bit of time with us this summer-lucky us!!
We have had a lot of fun in July. To start off Matt has had swim lessons everyday and he is proud to announce that he is in level 2 swimming. Its so funny to watch the instructors try to teach him the back stroke!! There is noway he is going to master that any time soon.
July 8th I had a sinus surgery, July 14th I went to the Neuroblastoma conference for 4 days in Chicago and got to meet some incredible families and wonderful Doctors-Matt got to stay home with Grandma Tink-he had so much fun that he didn't even want to go to his swim lessons or gymnastics. Then we left on July 21st for a trip to San Clemente and had tons of fun on the beach-boogie boarding,swimming in the pool, and visiting with family. Lastly we decided on a spontaneous trip to Lake Shasta for a houseboat trip with some family members-Matt was such a dare devil-I can only imagine what he will be like when he is 10! This is how are whole summer has been-Crazy fun and we love it. I figure I might as well do everything we want to do now since things inevitably will slow down if I get pregnant.
This month we are celebrating Matt's 2 year celebration of life(without cancer!)on Aug. 11th. I can't believe it has been 2 years-it seems like yesterday. We feel so blessed to have had these two years and there isn't a day that goes by that we don't continue to thank God for helping Matt get through this battle. We are definately not out of the woods but everyday brings us closer to that 10 year mark.
Thank you for continuing to pray for Matt!
WIth love, Debbie
Saturday, July 2, 2005 8:52 AM CDT
Hello family and friends!
Well, we are home after a quick 5 day trip from NY. All Matt's scans were clean-YEAH! The only thing off was his thyroid which was hypothroidism-ha! If you only saw him-he is the farthest thing from being sluggish. We will retest it again and it probably will not be normal but its not really too big of a deal in the grand scheme of things. Matt's kidney still is an issue that we will also have to watch. Then there is also the growth concern but the doctors have told me that growth hormones will not be in Matt's future and that his spine may not get its full growth since he had such a large area radiated. We will know all this when Matt reaches adolescence! How great of a day that will be!! When Matt is 13 we will be able to claim that he is indeed cancer free!
So, our trip was a great success. We didn't get to do too much since it was such a quick trip but we did catch a great Yankees game-Matt wasn't exactly into the game but he was really into the blue cotton candy. Instead of saying "aye batter, aye batter" he would call out "here cotton candy", "here cotton candy" and be standing on his chair waving at the cotton candy guy who was practically on the other side of the field. Needless to say we had a great time. Matt of coarse scared us tons before our visit-with random vomiting and diahrea-he even threw up at the baseball game. Thom and I are beginning to think that Matt's definately got some food issues-psychological food issues with all his treatment and vomiting he did when he was so sick.
The latent effects clinic was awesome and we will definately be keeping in touch with the MSKCC team on a 6 months basis or once a year. We know we are up for a lot of late effects with all the nasty treatment Matt had but as long as he survives this ordeal we will be overjoyed!
Everyday is a special day. Matt is having so much fun! We swim almost everyday in a nice hotel pool-that it so nice to let us swim in their pool. Thom and I realize that we need to get a pool and are hoping in the next year or so that we will make it happen somehow. Last night we road our bikes(Matt loves his tag along bike!) to a creek that has crawdads-Matt and Gabby had so much fun fishing for them!
We are having a lot of fun living in San Luis obispo. We get to ride our bikes everywhere and there is soo much to do! It looks like we might be here through October. Our house is renting like crazy. No complaints here.
We hope you all are having a great summer. We couldn't be having a better one.
WIth love, Debbie
Friday, June 17, 2005 11:18 PM CDT
Hello all!
We are getting ready for our trip to NY. Thom, Matt and I are leaving for LA Sunday and will be at the airport at 3:30am-ugh! We thankfully ended up gettting a room at the Ronald Mc Donald House vs. a place out of the city.
Matt has been having a blast swimming everyday-so much so that we are so ready to have a pool! For now swimming lessons and our friendly hotel pool will be just fine.
Please say a little prayer for our journey and Matt's scans and tests. Matt hasn't gained very much weight or gotten any taller in the last 6 months so we will be doing some growth hormone tests too. We are going to try to make this trip fun but no matter how much fun we have we are always so ready to come home.
Thanks for the support and prayers we really appreciate it!
Sincerely, Debbie
Saturday, May 21, 2005 8:42 AM CDT Hello loved ones.
All is great for us. Sweet Matt is doing awesome! Matt is having a lot of fun swimming, playing with friends, playing at the beach, riding bikes, and learning his kindegarten work. I never realized how much fun it could be to teach! Of coarse it is easy so far since he seems to pick up on things easily and has the enthusiasm and drive to stay with things that interest him.
We are getting excited to move back to SLO for the summer. We have lots of fun things planned and it is always nice to see Thom more. Around June 20th we should be flying to NY for Matt's 6 months scans and tests. This time they will do some growth hormone tests to make sure he is growing enough. I am hoping all is normal and that we can make this trip as fun as possible.
We hope and pray all is going great for you and your families.
With love, Debbie
Thursday, April 28, 2005 10:07 AM CDT
Hello friends and family,
We are all doing great! We had a great time skiing last weekend. Its so amazing that there is still snow. I have a conference Sat. but Thom is planning on going skiing with The Armstrong family. Matt has so much fun with Uncle Bruce, Denise, and their four kids. Matt is skiing down the hill on his own with the help of a little attachment at the end of his ski's (The worm). He can get on the tow rope himself now and is almost ready to take the worm off. We will see if his legs are strong enough.
Matt is eating so much better and I am hoping that he gained the weight that he had lost from the flu. He still randomly tells me that he has pain in weird areas-his foot, leg, etc.. Very scary when bone pain is an indication of disease progression-huh. He says the areas hurt but 2 minutes later he is fine so I don't know if it really hurts or not. I think its a normal 4 year old "thing" but who knows. Its been hard to wait for scans this time-6 months is the longest we have ever gone.
June 20th seems so far away.
We are always so grateful for all the support and prayers-THANK YOU!! Life is so precious and we know how blessed we have been.
Sincerely, Debbie
Wednesday, April 13, 2005 7:02 PM CDT Hello!
So, we have been quarantined to our home. Well, maybe not truly but it definately feels like it! Matt is making up for lost cootie time. First he got the bad chest cold that lasted over a month, then a head cold, and now a flu that has hung around for almost a week now. I of coarse have gotten each cold too and now I am ready to be done with it! We have missed two opportunities to ski and now I am hoping and praying that tomorrow Matt and I will be feeling better so that we can do another quick trip on Saturday. I am not feeling too optimistic but we will see.
The scary news is that Matt has lost a lot of weight and it is very noticeable on an already very thin kid. It scares me to see him so thin. It brings painful memories of the past and makes me want our scans to be tomorrow instead of June.
Please keep Matt in your prayers.
With love, Debbie
Sunday, March 27, 2005 9:05 PM CST Hello friends!
Our house was rented this weekend so we decided to take a quick trip to the snow. To get Matt all excited we rented a Warren Miller ski video and watched it the night before. Matt was so excited! Once we got Matt's skis on he was ready to ride the chair lift. Mommy said "no way!" Dad said "sure". So, off we went to what we thought was half way up but ended up being all the way to the top of the mountain. Matt loved riding the chair lift and loved riding between Dad's legs but really loved riding on dad's shoulders! Once we got down the hill we enrolled Matt into a lesson and lucked out with a one on one lesson. Matt made it look so easy! The instructor joked about Matt being a genius-ha ha. Matt had a great time but after 6 hours of skiing he was really tired. We all had a great time and the conditions couldn't have been any nicer-warm weather and great snow. We can't wait for our next trip!
I will put some new pictures up towards the end of the week.
Our next scan date is June 22nd in New York. We are continuing to look into Matt's kidney issue and are hoping that the increase in the doseage of his medicine will solve the problem. We will keep you updated.
Thanks for all the prayers!!
Love, Debbie
Tuesday, March 22, 2005 10:31 AM CST Hello all.
Its nice that we are somewhat back to a normal life. Matt's kidney is doing fine presently. We are testing his kidney function every two weeks to make sure all is going to stay well. His next check up isn't until June-yeah!! So, in June we will go to N.Y. for all his scans and check-in with his doctors.
We are renting our house out again-usually only on the weekends. So, we float from family, friends, and hotel rooms on the weekends. Its actually fun. We are listed on www.vrbo.com under Cayucos. Matt worries about the guests using his toys-even though they are all packed away. He understands that we share our house and since we share our house we get to do a lot of fun things! Like stay with friends and family! For Matt the more the people the more the fun.
Matt is loving his swimming lessons. We are hoping that he will be swimming by this summer-which would be great since we have so many fun things planned that seem to revolve around water.
Thank you all for your continued prayers for Matt and all the other adults and children batteling cancer. There isn't a day that goes by that I am so thankful for all the support and answered prayers!
Love, Debbie
Thursday, February 10, 2005 11:55 AM CST We will be making a quick trip to Stanford tomorrow-friday. Matt will be seeing his nephrologist and getting an echocardiogram. Then we are hoping to make our way to Tahoe for some skiing on Saturday-Matt says he is ready but we will see how it goes when we get there!
We will write later! Have a great weekend.
Love to you all!
Thursday, January 20, 2005 11:48 AM CST Yesterday Matt and I enjoyed an incredible day on the beach. We explored the creek, played with all the drift wood, dug holes, played in the sand, and Matt even went jogging with me-he isn't fast but he has some serious endurance. His ability to run for 6 minutes straight relieves my fears of his lungs having a capacity problem. When they clipped his diaphragm I didn't know how it would effect his lungs-as it was I knew it effected his Echocardio gram. So, it looks like he has no problems with his lungs! There are and will always be fears from all of his surgeries and treatment but I pray that they will never get in the way of having fun!
We are so enjoying life! Life just doesn't get any better then this! Love to you all.
Poem For Our Children
Mothers, touch your children,
Fathers, hug them tight.
Let them know you love them
Morning, noon, and night.
Put your arms around them,
Hold them near to you,
Feel the beating of their hearts,
The life that you made new.
Roll around the floor with them,
Tease and laugh and play.
Listen to what they'll tell you,
They have so much to say.
Take time to get to know them,
See the colors in their eyes.
Appreciate that person
That deep inside them lies.
Let them run their fingers through your hair
And down your face.
Fill their hearts with words of praise.
Make home their favorite place.
Cuddle with them on the couch
And watch a t.v. show.
Sing with them or share a book,
And help their world to grow.
Take a walk into the park,
Hold each other's hand,
Build castles in the sand.
Mothers, touch your children,
Fathers, hug them tight.
Show them what a gift they are.
To love them feels so right.
~Author: Kathie Davis~
Thursday, January 13, 2005 12:04 AM CST We are back from Stanford! Just a day and a half of scans-unfortunately that will be the shortest set of scans. From now on we will be adding a bone scan too.
All the scans showed no signs of disease-yah! Our only problem now is a little skin issue (ecsyma-I don't know how its spelled) and Matt's kidney. Tests showed that Matt is still spilling protein so we need to increase his medication and watch him closely.
I am always bummed that I don't have the energy to visit our friends in Palo Alto. Matt and I are so eager to make our way back home. Lisa, we miss you and your wonderful family. We will always be so gratefull for you incredible hospitality! Sharon and Grace, What would I have done without your support and prayers? You both are the sweetest and I hope you both will be able to celebrate, with me, on that day that we can say Matt is cured!
My gratitude to all of you is still so close to my heart. I know I will always get emotional at the thought of all the love shown to our family. Thank you all for your support and prayers! God has indeed blessed our family with incredible friends and family.
Monday, January 10, 2005 9:23 AM CST Sorry, for the lapse in journal entries. We are definately enjoying life and being lazy.
January 11th early am we will make our drive to Stanford for our routine follow-ups. We will be there for three days but hopefully only two days. Matt will have a small surgical procedure to remove his hickman cuff, an IV placed, blood draws, a CT scan, MIBG injection, appt. with his Dr., and lastly an MIBG scan. This will be our easiest follow up appt-with less scans and the deletion of bone marrow aspirates.
If we don't update soon don't worry. Most of the time, no new is good news.
All else is great! Check out the new pictures.
Saturday, December 4, 2004 9:20 AM CST Hello from Hanalei Bay, Kauai!
We are definately having a great time. Yesterday we had a great day at the beach. Matt is addicted to what he calls surfing. He is using a boogie board but calls it a surf board-he wants to surf like dad. He rode wave after wave and kept saying "one more wave". The kids (a little older) here have really small surf boards-I can totally see Matt doing that next year.
The weather is very comfortable here. Thom and I can see ourselves staying here forever. The locals are friendly and immediately you can feel the Slow pace of life. We are going to watch the sunrise this morning at Annini beach.
Matt is doing great. He is slowly eating new foods-last night he asked for and ate a hot dog-a very big deal for us! He definatley has all his energy back and we are loving it. We will be going back to Stanford on Jan. 11th-14th for all our tests again.
We are humbeled by the many deaths of neuroblastoma children that have died in the last 2 weeks. One of which was diagnosed a year before Matt and relapsed in July and lost his battle at the end of Nov. A quick reminder that we are no way near the end of the woods.
Please say a prayer for all the sweet children and their families batteling cancer and pray for a universal cure-a cure for all cancer.
Sincerely, Debbie
Thursday, September 30, 2004 1:03 PM CDT Well its been a long time since I updated this page-sorry! I finally have a computer at home now.
So, all of Matt's scans and test came out negative for any disease. Our next scans will be right before Thanksgiving. Matt will get an MIBG, CT scan, and have his cuff from his central line taken out.
We moved back into our home on Sept. 15th. I miss being in town and close to Thom while he works but I also love being in Cayucos. Matt loves our neighbors and he enjoys playing with his buddy T.J. who is almost 2 years old.
Thom has dug a hug hole at the beach for Matt and for Matt's birthday party. We are so excited to be able to finally have a party and have friends over and to not have to worry about Matt's immune system!
Matt's enjoying all the normal kid stuff-playing, playing, playing. He still is a train finatic and gets on to the computer to search the Lionel catalog for Trains he thinks he needs. It looks like we may be buying a train shortly. Its also nice to see how social Matt is. He was such a social little boy but when he got sick and while he was sick he rarely talked. SO it is refreshing to see the old Matt back-full of energy and non-stop talking.
Our buddy Spencer will hopefully be coming home in a month. He has recovered incredibly but will still be in isolation for another 6 months or so. We are just so excited that he gets to come home and that we will be able to see them.
Thom is still planning on taking the month of December off. We had planned on taking a long trip with Make a wish but they didn't want us to leave California so we are going to Kaui for 2 weeks and then to Lake Tahoe for a few days too. We look forward to spending some family time together.
Lunch for Life is in action. So, if anyone would like to donate please check out www.Lunchforlife.org 2 out of 10 kids that get neuroblastoma will survive. It is the most common cancer in infancy. To help find a cure, donate your lunch money to our research fund and -this is the important part-ask 5 friends to do the same. Tell them to ask 5 friends. Then pass it on. You get the idea. This is the only way we'll succeed. What's exceptional about this organization is that 100% of the money donated is not only a tax right off but 100% is put towards research and to help the families-no money is allocated for administrative costs. Any way you could help would be greatly appreciated!
Thanks!! Love, Debbie
Wednesday, September 8, 2004 7:53 AM CDT Hello there!
We are back from NY and finally got some results back. Our CT scan and MIBG are clear of disease. Now we are
waiting on the Bone Marrow's and urine tests. We will update with results as soon as we get them.
Love, Debbie
Thursday, July 29, 2004 8:18 AM CDT Hello wonderful friends and family,
We just got back from Chicago and had a great time. Matt had a great time playing in the Kids room. They had so many fun activities that he usuallly did not want to go. It was cute because the staff recommended that the parents not visit the kids because the kids may want to be with the parents-WELL that is not the case with Matt. OH no. He is very happy without us. We checked on him many times because we missed him! Anyway, we did learn some things from the conference and as expected had a difficult time with hearing some of the sad stories. Thom and I both realize and live each day with the fear of relapse. We make every effort to not forget the looming danger and yet to apppreciate every day. Ten years is a long time to wait for that big Cure word and yet the statistics do not get any better as time goes on. So, at no time are we out of the woods. So frustrating.
I don't know how many of you heard about Alex's lemonade stand but if anyone would like to host one please let me know and I can get you the fun info. We so need a cure! After hearing the Angel parents, talking to the parents of kids who are running out of options, makes us realize that we are running out of time.
So, on to good news. Before our Chicago trip we had went to Laughlin for 2 full days of playing in Lake Mohave and eating buffet dinners. No gambeling for us but it was so much fun watching Matt enjoy the water. He loves being with his extended family.
We still haven't figured out what to do with Make a Wish. THey pretty much bursted our bubble by telling us that we couldn't leave California! We still are trying to save the money for a trip in December. Ideally a one month long trip to Australia. Now we have to figure out how to do it reasonably. The thought of swimming in warm water, relaxing everyday, with no stress, sounds like such a great family trip.
Matt is still doing gymnastics twice a week and swimming every day. I was sick for a few days and I think he actually liked the TV/inside time. He was so sweet to me. He would ask if I needed water and medicine, and rub my arm or face and give me lots of hugs. Wow! I love the roll reversal.
So, all is going great for us! We thank God every day. Please keep the other children in your prayers.
Love, Debbie
Friday, July 23, 2004 8:31 AM CDT Hello from Chicago!
We finally, after a 5 hour delay in Indianapolis, made it to Chicago.
A message for Jan- Please call me when you get a moment. We couldn't find our address book before we left and I would love to talk to you or see you if possible. Please call me at 805-441-2758.
Love, Debbie
Monday, July 5, 2004 9:40 PM CDT Hello all,
Sorry its been forever. I haven't had our laptop and all the important info. was on it. Anyway, we got back last monday evening from N.Y. with good news. Matt's scans and tests all came back clear. Yeah!!
While in N.Y. we tried our best to have a good time. We went to a Mets baseball game and then realized that Matt could care a less about the game but was very interested in all the garbage food-especially the big blue cotton candy. Then another day we got to see our friends Joyce and Sean and their three kids-we had so much fun watching the kids play in central park. It was nice to finally meet their kids and for Sean and Joyce to see Matt healthy. Then another day we decided to rent bikes and see how well we could manuver in Manhattan traffic. Ha! We rented them on a Saturday and the city was actually pretty calm. We had the best time riding around Manhattan. Then on our last day we rented a car and drove to church in Philadelphia then drove to Atlantic city. Anyway, we had a good trip but we are glad to be home.
Our new home is a a one bedroom apartment that Matt calls "our little house". This last week was our first week of fun. Matt got to try gymnastics in which he loved and we went swimming at the pool a few days, and the beach 3 days. We are also trying a parent participation class. Matt is so ready for socialization. He talks about his "friends" all the time.
We love being in town. Every morning I get to go running along the railroad tracks and Matt excitedly jumps into the stroller. He is still a train finatic. Then we are so close to everything that we get to ride our bikes all the time. We are looking forward to lots of fun times this summer.
Tomorrow we drive to Stanford for a clinic check and a check up with the nephrologist. Prayerfully all will go well.
Please keep Cole, Ben, Christi, Alex, and Simon in your prayers. All of these children have relapsed and are running out of treatment options. Thank you for praying for Spencer! He is doing so incredibly well. We still pray for him everyday-hoping that he will continue to do well.
Thank you for all your love and support! We know God has blessed us with an incredible support group of great family and friends!
With love, Debbie
Friday, May 21, 2004 8:45 AM CDT Hello there!
We are appreciating everyday as Matt enjoys life to the fullest. Last week we drove to Stanford to see the nephrologist. Matt is taking a ace inhibitor to stop the protein spillage and the damage to his one kidney. Its a very small dose and hopefully will be effective.
We are getting ready to move really soon. Our house isn't ready yet so we are happy that the management company didn't find anyone for this memorial day. We could use the extra days to catch up. Anyway, we are looking forward to living in San Luis for the summer!
With love, Debbie
Just for this morning, I am
going to step over the laundry,
and pick you up and take you to the park to
play.
Just for this morning, I will
leave the dishes in the sink,
and let you teach me how to put that puzzle
of yours together.
Just for this afternoon, I will
unplug the telephone and
keep the computer off, and sit with you in the
backyard and blow bubbles.
Just for this afternoon, I will
not yell once, not even a
tiny grumble when
you scream and whine for the ice
cream truck, and I will buy you one if
he comes by.
Just for this afternoon, I won't
worry about what you are
going to be when you grow up, or second guess
every decision I have made
where you are concerned.
Just for this afternoon, I will let
you help me bake cookies, and I won't
stand over you trying to fix them.
Just for this afternoon, I will take
us to McDonald's and buy us both a
Happy Meal so you can have both toys.
Just for this evening, I will hold
you in my arms and tell you a story
about how you were born and how
much I love you.
Just for this evening, I will let
you splash in the tub and
not get angry.
Just for this evening, I will let
you stay up late while we sit on the
porch and count all the stars.
Just for this evening, I will
snuggle beside you for hours,
and miss my favorite TV shows.
Just for this evening when I run
my finger through your hair
as you pray, I will simply be grateful that God
has given me the greatest gift ever
given.
I will think about the mothers
And fathers who are searching
for their missing children,
the mothers and fathers who are
visiting their children's graves
instead of their bedrooms, and mothers and
fathers who are in hospital rooms watching
their children suffer senselessly, and screaming inside that they can't
handle it anymore.
And when I kiss you good night I
will hold you a little tighter, a
little longer. It is then, that I will
thank God for you, and ask
him for nothing, except one more day.............
Author Unknown
Saturday, April 24, 2004 5:39 AM CDT Hello there!
Well, we had a very long day at our local hospital. Matt had a lot of dental work done and unfortunately twice as much as we had thought. He was under for almost 4 hours and our wonderful friend, Dr. Dean, our pediatric dentist had to do a total of 8 silver/porcelin crowns and fillings on every tooth. Originally we were thinking that just the upper front teeth would need crowns but it looks like the four uppers and lowers. We were very lucky that Matt didn't have any extractions since any extraction in the front would have posed a speech problem which would have made our speech problem even more difficult to work on. Needless to say this simple procedure was very difficult on both Thom and I. I think we have been strong for so long that when we let down our guard,for even a moment, we are overwhelmed with the flood of emotions. Hasn't he gone through enough? When does it stop? Thankfully Matt has such a great personality and attitude that I think he will be able to overcome the social aspects of all the silver crowns and the hearing aids. We have really noticed that Matt works off of us. If Thom and I are acting and saying that all is great then all must be great. Its just hard and I know most of you think this is so miner compared to what we have gone through but nothing is miner when it is your child. As parents we just want what is best for them and at some point we want our child to have a somewhat normal life.
Our buddy Spencer is doing good. He is in North Carolina getting prepared for his transplant. When I called the other day I could hear him in the background loudly growling like a lion. It was so nice to hear. SPencer and his parents are making the most out of these days before tranplant, as they know the recovery process will be long. Please continue to keep Spencer and his mom and dad in your prayers.
We will be meeting Matt's wish granters next week. Thom and I have thought long and hard about what Matt would most enjoy. Matt loves trains but when we go to do train stuff its not really the trains its the people he is with that means the most to him. Matt had both Thom and I for a lot of his treatment and for the last 6 months its been hard on him to see daddy go to work. So, we are going to plan a long one month trip. We are planning on doing it in December, when a lot of people already take vacations, and we are hoping that the impact on Thom's bussiness will be minimal. Decemeber is summer in New Zealand and Australia. We will see what we come up with.
We are so thankfull for every day we get to spend with Matt. We know far too many parents who have lost their children to this disease. We thank God many times throughout our day for his presence in our lives and pray that one day we will find a cure to childhood cancer.
With love,
Debbie
Saturday, April 3, 2004 6:55 PM CST Hello all!
It looks like Matt's scans came back good. We just continue to thank God everyday.
While at Stanford this week Matt's urinalysis came back with protein again and after another more specific test the doctors are convinced that we will need to keep a closer eye on Matt's one kidney. We will be seeing the Renal team and Matt will be put on an ace inhibitor to stop the damage to his kidney. We will know more specifics once we actually get to talk to Dr. Yorgin-the nephrologist.
So, we are home again and sooo happy! We definately appreciate each day.
Our sweet Spencer still needs our prayers. He is still at Stanford batteling high blood pressure, mouth sores, fevers, and finally his counts are slowly coming up. Please pray for his recovery so that he can fly to North Carolina soon for his cord blood transplant.
Thank you all for your prayers!!
Love, Debbie
Saturday, March 27, 2004 9:58 PM CST Hello all!
We sure have had a great couple of months! Wow, how the time passes so fast. It looks like this tues-friday we will be doing all of Matt's scans and tests again. So, back to Lucille Packard on Monday night. Thankfully Grandma Tink will be staying with us too. This will be the first time that Matt needs an I.V.-since his central line is out.
Scans are always stressfull-so, prayers are greatly appreciated.
We started up our jacuzzi and probably go swimming in it 3-4 times a week. Thom is working on teaching Matt how to swim. It just makes me sooo happy to see Matt play in the water-whether it be the bath tub, hose, or hot tub.
Matt's energy level is almost back 100%. He is still taking nice big naps (2-3 hours)and I don't know if that is normal or not. Anyway, life couldn't be any better. We love being home.
Our sweet friend Spencer has just received the good news that he is in remission. This next week Spencer and his mom and dad will fly back to Duke University to get started on his Cord Blood Transplant. Thank you so much for praying for him. God is definately answering our prayers!
With love, Debbie
Wednesday, March 10, 2004 5:01 AM CST Hello there!
Well, its been too long since I have updated. We are doing great! Matt is having so much fun. He loves the water,now that he can take baths and swim, we have been playing in it a lot! We play in the jacuzzi-where Thom is teaching Matt to swim-very scary for me to watch-Ha. Then we get to play at the beach and play in the water there too. We are so thankful for the great weather we have been having. I was really getting tired of the rain. Matt has also enjoyed the socialization. He is sooo ready to play with friends. It was like a light switched on and he decided that it was now time to play with friends and be social. He says "hi" to everyone and almost attacks people who stop by the house-and it doesn't seem to matter if we know them or not. I think he finally feels good and is comfortable knowing that he is home now.
We are busy with tons of catch-up work. We are getting our finances in order by selling our van, renting our house, and I am temping and looking for permanent work. I am quite anxious to start work since that will mean leaving Matt. Plus there are the numerous appointments-speech therapy, hearing appointments and hearing aids to come, dental appointment with a hospital visit for restorative work, and of coarse the Stanford visit on March 19th, and the scans the last week of March. Thom and I are also catching up on our appointments and trying to slow his bussiness to a resonable pace. We gladly accept this new life. I am sure we will get it all under control soon.
I am so thankful to God everyday for his presence in our life and for the awesome miracles he has performed within Matthew. I continue to pray for Matt's continued health. Matt will have scans on the last week of March and first part of April. Poor guy will have an IV in for 4 or 5 days. Plus the other day I realized that the surgeons left a part of Matt's central line in his chest. What were they thinking??? I sure wish they would have asked us what to do or at least notified us that they left the cuff in. So, I am not sure what the doctors will decide to do about that. I can't imagine that it would be good to leave it in since I have an active toddler who will bump it and push on it while playing-I am sure that doesn't feel good. Well, that is the least of our worries.
Please pray for our sweet buddy Spencer. Spencer was doing awesome in his treatment for Leukemia when he recently relapsed in his Cental Nervous System. Now he will need to start a new protocol which will include a Bone Marrow Transplant. His parents (Kerry & Brian) are thinking about doing the BMT(actually cord blood transplant) at Duke in North Carolina. Please pray for God's guidance in their life and with their decisions. Pray that God gives them the emotional confidence and reasurrance that he is in control. Pray that he holds them up during this very difficult time.
Thank you all for your continued prayers and support. I am brought to tears easily by all the amazing support and love that our family has recieved. Thank you!
WIth love, Debbie
Saturday, February 21, 2004 9:23 AM CST Hello friends,
WOW! We have been having so much fun lately! Matt's line was pulled, and his bone marrow's were clean. Our next appt. is for a rountine check and then in the beginning of April another set of scans.
We got to go to Roaring Camp in Santa Cruz. Matt enjoyed it but I wouldn't say that he loved it. Thom and I now realize that Matt's very favorite is just playing with friends and family. He is so excited to be able to play and socialize. He had so much fun playing with Van, Riley, and Tess this past week! I even took him to a park, for the first time in I don't know how long, and he had so much fun! He also had his first bath in almost a year and a half and he LOVED it!
Its definately been more evident lately that he needs hearing aids. Next week the school district comes out to check his speech development and a few days later we go in again to try to check each ear individually and possibly make the molds for his hearing aids. Its all scary but nothing compared to what we have been through.
So, all is great! We couldn't be happier! We thank God multiple times throughout the day. We hope and pray all is going well for you and your families.
With love, Debbie
Sunday, February 15, 2004 8:49 AM CST Hello loved ones!!
Yes, we finally got the news! Matt's scans are clean. Dr. Sara Doldson, radiation oncologist, gave me her opinion about the CT and basically said its nothing and that CT are for soft tissue. Then, N.Y. doctors said that everything looked great. We will be repeating alll the tests in April again and then August. This battle is a long ways from being over but what a relief it is to get a break. We are so excited!!
Today we are going to church in Salinas and then spending the day in Santa Cruz. We are hoping to ride the train at Roaring Camp. Its a steam engine that takes you through the mountains of Santa Cruz. Then on Monday morning Matt will be getting his central line out and a bone marrow aspirate. We are so excited to go in the water. It looks like I need to get a swim suit and some bath toys-YEAH!
Yesterday, we had a blast at the beach. It was one of those incredible random beach days. Matt had so much fun with Van and Riley Rebstock. Van just kept pushing Matt all day long in his big excavator. We look forward to more fun days-after all we have a lot to catch up on.
Anyways, we are off to church. I will write later. THank you all for your prayers!
With love, Debbie, Matthew and Thom
Tuesday, January 27, 2004 10:01 AM CST Hello,
So, We have had a anxiety ridden week. Matt had to
do two MIBG scans since there was uptake on the first.
His CT scan showed uptake on the Thoracic 11th vertebra
and they did a bone scan and decided to do an extra 3D scan.
Thankfully the doctor's were being extra thorough and found
no disease. They are thinking that the uptake in the CT
could have been from the radiation that Matt had in that area. Nevertheless, I am sending all the scans to N.Y. to
have a second opinion. I want to make sure that we all agree that Matt is done with treatment and that his line can be taken out. I will let you all know what N.Y. says. So, for now I have a million and one things to catch up and will update soon.
With neverending love and appreciation for all the support and prayers,
Debbie
Saturday, January 24, 2004 4:36 PM CST Hello,
So, the scans look good so far. The MIBG test somewhat
ruled out the CT scare. The nuclear med people need
to find all our old scan (LOST) and compare to the new
one and give us the final results. On Monday we will
do a bone scan and sometime soon we have decided to also
do a bone marrow aspirate. We are also planning on sending
all the information to Memorial Sloan Kettering in NY.
If they have any doubts on anything we will go to NY and
do more tests. We highly respect the NY doctors and their
opinion means a lot to us. We are praying that everyone
will agree that Matt is disease free and that we can take
his line out sometime in Feb.
We continue to Have stong faith in GOD and that Matt will
get through this. Thank you all for the incredible support.
With love, Debbie
Thursday, January 22, 2004 5:09 PM CST Hello all,
Just a very quick update. Matt had a CT scan that showed
something in the body of the vertebra (T-11)but I am too worried since he has never had signs of bone marrow involvement-That is why he is stage III. We just finished a MIBG scan this morning at 10:00 and we are anxiously awaiting the results-should be within the hour.
We get to leave the hospital tonight and come back on Monday for a Bone scan. This tx went great other then we shared a room this time with a sweet boy named Sage who was sent home with hospice and 1 week or so to live. He was the sweetest and it made his day to be able to play with Matt.'
I will update soon. Love, Deb
Thursday, January 15, 2004 7:25 PM CST Hello there!
Well, it looks like Matt will be getting his scans next
week while we are in-patient doing the LAST antibody tx.
He is doing great! He is running around like the wild
boy that he is and he is sleeping great! I have had him on
an appetite stimulate that has also been working great-at
his check up today he weighed 13kg(about 29 pounds). I have
also had the feeling that he might finally be growing.
Tomorrow night we leave to spend the night at the Disneyland
Hotel with our family. My uncle is turning 50 and is generously paying for our tickets. This will be Matt's first time at Disneyland. I just know that he will be so excited to be with everyone. He is such a ham when he has a captive audience.
Matt's outgoing personality is coming back. He seems to be doing so great. I am praying for some excellent results on these scans! I am quite anxious since its been six months.
I will write again soon!
Love, Debbie
Wednesday, January 7, 2004 8:30 AM CST Hello all!
Matt finished his difficult round of antibodies with relatively few side effects. Now we are home now for 19 days-11 days left-but who's counting.
Matt is doing great and enjoying his time at home. He is regaining more and more energy. He loves to jog on the beach and he can actually jog for one mile! I think he will be my future jogging partner.
Matt is still into his trains and can occupy himself for some time. Hopefully this weekend we will go to a train show in Santa Barbara-Matt would be in heaven if we go!
So, we have one more antibody round (jan 18-23)and then scans on the last week of January. We are hoping and praying that the scans look excellent and that we can remove Matt's line. We are looking forward to swimming and playing in the bathtub and resuming a somewhat normal life.
Thanks for continuing to pray for Matt and our family. We can't thank you all enough for the support and prayers!!
With love, Debbie
Monday, December 22, 2003 5:25 PM CST Hello all!
Well I have not had internet access for some time-sorry for the delay in an update.
Unfortunately, we did not get to have the scan that was planned last week. Apparently there were no anesthesiologist available? So, we will wait for all the
scans at the end of Januray. That means it will have been six months since Matt's last scan- a little scary.
Last week we got to do the IL-2 as an out-patient. We stayed at Lisa's house in Woodside and had a great time with grandma Hume!
This week is the difficult week. The good news is that this is the last difficult round. In Janurary Matt will just get the antibody without the gmcsf shots. Then scans at the end of Jan. and possibly remove Matt's central line in February? We are praying that all goes smoothly and that Matt's scans are clear.
Today, Matt has had a few weird side effects but so far everything is controllable.
We had an earthquake today in Cambria-which is about 10 miles from our house. We felt it here in the hospital 3 hours away from home. I actually thought it was probably San Francisco. Never would I have thought that it was in our home area. Our house had very little damage-just a broken pipe to the water heater and a mess in the house. Brian and Kerry live in Cambria and had some things fall and break-including a fountain and some lumber fell and landed on their new car but other then that things sounded ok.
Please continue to pray for Matt, Spencer, Stefan and his mom Andrea, Katie who isn't doing well, Jordan, Carl, and all the sweet children going through difficult times.
I promise I will try to update more often since I now have the internet! Have a great Christmas! Here is a sweet poem from a CD from Menlo Presbyterian-
Light of the World,
You stepped down into darkness,
Opened my eyes, Let me see,
Beauty that made,
Hope of a life spent with you
King of all days,
Oh so highly exalted
Glorious in Heaven above
Humbly you came,
To the earth you created
All for Love's sake
Became poor
WIth love, Debbie
Wednesday, December 3, 2003 9:26 AM CST Hello again!
Matt finished his antibody round. Unfortunately, we didn't get to do the GM-CSF shots so we have no idea if this round did anything at all. Matt breezed through it and had almost no side effects. Since Matt had allergic reactions to the GM shots the doctors are thinking about adding a round of IL-2 and antibody-the very difficult round. So, starting the 15th of Dec. Matt will start the IL-2 and then the 22nd he will start the difficult round of IL-2 and antibody. THen come January it looks like we may repeat this round of IL-2 and antibody. On the week of Dec. 15th Matt will also have a MIBG scan to see if there is any disease. Matt will get MIBG scan every 3 months for the next year and you can bet that my anxiety level will be high! Since I am in contact with a group of nb parents I am always reminded that the chance of relapse is high. The doctors still have not labeled Matt as NED-no evidence of disease and personally I am even scared to say NED-since it seems like such a false sense of security.
We had a late Thanksgiving at my mom's house with some of our extended family. We had so much fun! It has been so long since we have been able to be with them all. Matt and I had a great time visiting everyone and playing. We are hoping and praying that we will be able to participate in more family get togethers.
We are thankful for each day that Matt is happy and playing. We are hoping to go to the snow for 2 or 3 days before treatment starts (dec.11-14). We know Matt would
have a lot of fun sledding since he is such a dare devil.
Well we just got home but it looks like we have just over a week to clean, get holiday stuff together, and enjoy home.
I hope the break is enough for Matt. He loves to be home.
Yesterday we went to "Daddy's house" and walked down to see the train. Matt gets a big kick out of looking at the trains. Maybe one of these days we will take a little trip to Santa Barbara. Maybe when treatment is over?
Sorry for all the rambeling. We hope you all have a great week. Love, Debbie
Tuesday, November 25, 2003 8:23 AM CST Hello!
Yesterdays treatment went very well with only one glitch. Matt had another reaction to his GM-CSF shot. So, we are not going to be able to do the shots anymore. Matt is happy but now we don't know how well this treatment will be for him. We are praying that all this pain and suffering minus the shots will be Matt's answer to a cure. Oops one more problem Matt's lines aren't drawing blood so we had to do a finger prick and I am praying that we will eventually get his lines to work. I would hate to have to put a new central line in when we are hopefully done with treatment in the beginning of Feb.
Matt's attitude is great. He keeps both Charleen and I busy. Yesterday he also ate great for the first time during treatment. We are hoping today we will be as lucky!
I will update soon again. We hope you and your family have a great thanksgiving. We have an incredible amount to be thanful for! With love, Debbie
Wednesday, November 19, 2003 6:57 PM CST Hello again.
Matt, Thom and I, have been having so much fun being home. Actually Matt even had fun going up to see his cousins, Christian and Gabrielle, his Uncle Tom, Auntie Suzanne, and grandpa Miko. My mom stole Matt on a Saturday morning and returned him on Sunday around 6pm. Most of you asked us what fun things did Thom and I do? Well, we went to work Saturday and worked on invoices for 6 hours-JOY! Actually it wasn't too bad. After all invoices are very important. Thom's bussiness is sluggishly moving on. Usually Decemeber is a big bonus time and we are just waiting for money to come in to give to the employees for helping us through this difficult year. So anyways, Matt had a lot of fun with everyone but was also excited to be home. He ran in the house saying "I am home". Of coarse we came running. It was difficult not having him around.
Today Thom, Matt and I had lunch together in Morro Bay. We went to a toy store and bought a Thomas car wash and we also got to see and feed the seals. Matt loved the loud noises the seals made. If you see if ask him what noise the seals make and he will tell you all about it. It was so nice that daddy was able to take some time out from work and be with us.
Tomorrow we get to go to Spencer's 3rd birthday. We are really excited. His mom and dad even got the local fire station to come by the house and give us a ride!! Thad should be a lot of fun. Spencer is doing great. He has handeled all his treatment so well. Possibly by Janurary he will be on a maintainance chemo and hopefully will not have as many days in the hospital.
Friday we go up to Stanford for a check-up and Matt's GM-CSF shot. We are doing the shot in the day hospital since Matt had an allergic reaction the last time he got it. I am praying that he handels it well so that we can go home. We will return on Sunday to check in the hospital for treatment to start on Monday-Thursday and hopefully leave friday am. We are planning on going to Roaring Railroad Camp in Santa Cruz on our way back Friday. Matt will be so excited to ride a steam train!
Please pray for Matt during Thanksgiving week while he is undergoing treatment. When we are finished with this round we will only have 2 more rounds to go. Yeah! I am praying that Matt continues to do well and that no further treatment is needed after this tx. You can also pray for a little boy named Caleb. Caleb's mommy isn't doing so well (mental illness and isn't making good decisions with her life) and Caleb is in the custody of a friend. Caleb is about 2 1/2 and I have told this friend that I would possibly be up for adopting him in the future. Just the custody hearing is a long process and therefore adoption would be at least 6 months-a year away. I am praying that God will give me the answer. If it is God's will I would love to be a mom to this sweet boy.
In this time of thanks I would love to thank all of you for your encouragement, loyalty, and support. God has blessed me with wonderful family and friends. As I have said many times before I am forever grateful! WIth love, Debbie
Monday, November 10, 2003 4:44 PM CST Hello!
We had another great day! Thom had told Matt that we could go to the beach when the sun wasn't hidding. Well today the sun decided to peak out amongst the clouds and Matt immediatley noticed. Matt said, " Mommy we need to go to the beach- the sun came out!!" So, we packed up the sand toys and off to the beach. We had a lot of fun. Matt was feeling really good. He walked the most I have seen him walk in a long time. He was on a rampage to collect as many shells as he could. Our beach has an endless amount of shells so I knew we were in for a long walk. It was like a easter egg contest. We ran from shell to shell putting them into his sand bucket. Finally after an hour of collecting shells Matt decided it was time to go home. When we got to our house he noticed the Schwann truck parked in front of our neighbors. He said, " Mommy an ice cream truck!!" "Ice Cream!" I told him that it wasn't an
ice cream truck but he could ask the man if he had ice cream. Matt has only seen one ice cream truck and that was in New York but he will never forget it! So, Matt asked the man for an ice cream and the man gave us two ice cream sandwiches. Wow-how nice! Matt thanked the man and we ate our ice cream and played with Matt's Thomas trains the rest of the day. Its so nice to see him feeling good.
Thanks for your prayers! We are so thankful for your support.
Love, Debbie
Thursday, November 6, 2003 9:49 AM CST Hello!
Matt is doing great! He is eating more and is happily playing-usually with his trains. Yesterday we went outside
and he rode is bike. He was doing so good I decided to let
him go down a little hill by himself. Not a good idea! He wiped out. Bad momma! He was totally fine but I think I traumatized him. We will see if he is up to ridding the bike today.
Last night we took a walk on the beach. The weather was perfect and the tide was out just enough so that we could take a good walk. It was pretty dark since clouds were covering the moon but we could still see where we were going. Matt told us that he wanted fireworks at the beach so we brought some down and put on a mini firework show for Matt. We all had fun.
With the weather changing and it getting so dark so early it feels like the holidays are approaching. We are planning on going to Santa Cruz after our next treatment. We know Matt will really enjoy the steam train ride through the mountains!
Anyway, all is great here. Thom and I are working on some fundraising ideas for Lunch for Life. We will keep everyone updated. Thank you for continuing to pray for Matt.
With love, Debbie
Sunday, November 2, 2003 11:56 AM CST Hello!
We are home-yeah! Matthew did great this week. God most definately answered all of our prayers! We are excited to be
home for almost 3 weeks. Tomorrow we will be driving back to Stanford for the day for exam and blood work so that Matt can start taking the Accutane for 2 weeks. After the Accutane he will start taking Gm-csf shots-hopefully not having any allergic reactions to it this time. We will check into the hospital on the Sunday before Thanksgiving and be staying the week of Thanksgiving. We will have a little Thanksgiving feast in the hospital and be thanking God, as we do every day.
Today is a relaxing day. Its 10:00 and we are all still in our pajamas. Thom has a cold so he is wearing a mask laying in front of the football game. Matt is practically playing on top of him. He misses his da da. Matt has been coughing and sneezing so we are hoping he didn't catch Thom's cold.
Matt actually felt good enough on Halloween to get into his batman pajamas and walk into the hallway of the hospital for some trick or treating. He lasted about 15 minutes and then I think he got a bit intimidated by all the people-so he asked to go back "home" but I am sure he meant his room. He had a lot of fun going through all his Halloween goodies and organizing them of coarse! He organizes everything.
Thank you all for the continued support and prayers! We have never been more thankful for all the wonderful friends and family then we are now. We will forever be gratful for your help during this difficult journey.
With love, Debbie
Friday, October 31, 2003 8:04 AM CST Well, today is the last day. The whole infusion will end about 9:30 on Saturday. Matt has had strange side effects from the IL-2-his eye hurts occassionally, and yesterday we think for a while his throat swelled a little so it was difficult for him to take breaths. Poor sweet Matt just had to be holding me tight to help him relax so that he wouldn't panic and make it more difficult to breath. He was eventually able to fall a sleep and when he woke up he felt all better. A little boy brought by a bucket full of Halloween treats and toys. So, the rest of the night we played with all the fun Halloween stuff. Thankfully Matt had a great night and we are ready for one more day. We are continuing to pray for God's protection.
With love, Debbie
Wednesday, October 29, 2003 9:23 PM CST Well, today was another pretty good day. Matt received magnesium and albumin last night and early morning but that was it. Today he has had the typical fever-hopefully caused by the IL-2 and not an infection. He is still very irritable but if I felt like I had the flu I think I would be pretty cranky too. He is retaining fluid but I am hoping by tomorrow morning he will have peed a lot of it off.
I am thankful for your encouraging words and prayers!
Love, Debbie
Tuesday, October 28, 2003 8:47 PM CST Hello there!
Wow, today actually went very well. So far so good. Matt
is pretty cranky but I feel its expected. He is on a lot of morphine and the antibody and the IL-2. He got sick once but other then that it has been an uneventful day-thank you GOD! I am praying for a good night tonight and hopefully Matt will be able to get rid of the fluid he has retained from the antibody.
I will keep you updated. The recreation people are bringing down some cookies for Matt to decorate. I am hoping that he will want to. I am just so excited to see him doing so well so far! Love, Debbie
Sunday, October 26, 2003 7:04 PM CST Dearest loved ones,
Matt and I were able to escape the hospital and enjoy a day and 1/2 at home. We had our warm beautiful fall weather for the weekend. We spent most of the day hanging out at the beach and playing games with Matthew inside. He still loves playing inside his safety zone-home!
Tomorrow we leave to go back to the hospital. I find myself having more trouble each return to the hospital. I guess to be truthfull I get depressed. I am so tired of this! I want it all to be over with. Logicly I know Matt needs the treatment but its so hard for me to watch him go through it. I continue to pray that one day there will be an end to the treatment and that Matthew will be able to grow up to be a young man.
Treatment will start on Tuesday morning through Saturday morning. This is the treatment that combines both antibody and the IL-2. This treatment has a list of side effects that happen to 5-20% of the kids. Side effects that are very scary to acknoweldge. I thought chemotherapy had scary side effects but unfortunately this has worse side effects.
I appreciate prayers for our little Matthew.
With love,
Debbie
Thursday, October 23, 2003 11:35 AM CDT Hi there!
I was bummed to see that my journal entry never made it to the web site-I wonder were it went? Anyway, we are day 3 of the IL-2 antibody and Matt is doing excellent. I pretty much expected this week to be uneventful but I am still pleasantly surprised. I guess this means we will be able to do the IL-2 next time as an out patient.
Matthew had a great birthday! We got a bouncy house and that was a lot of fun. Plus my dad, my brother, and Thom dug a huge pool sized hole at the beach. We put a slide on the side of it and the kids slid down it into the pool. Matt had so much fun. He just ran, played and screamed with happiness the whole day. I think we all had a blast!
Matt needs my attention so I will go! Have a great week and appreciate your loved ones and look past the trivial little problems of life. WIth love, Debbie
Friday, October 17, 2003 5:26 PM CDT Hello my wonderful family and friends,
Today our friend and love, Justin went to be our Lord.
He went peacefully with his mom and dad both holding him. Please pray for both Susan and Anthony as they go through the most imaginable-the loss of their child. They have been incredibly faithful servants to GOD and I know he is holding them tight.
Yesterday our friend Spencer was officially deemed cancer free after only about 3 weeks of treatment. In addition, our friend Stefan is doing much better and is at home playing and harassing his sister. Go Stefan!
Matt continues to be very needy. He wants my 100% attention and I try my very best to give it to him. I have learned the value of each day and we try to have as much fun as possible in a day. Tomorrow will be a great day. Matt doesn't really have the concept of birthday but I have a feeling after tomorrow he will be wanting one everyday! We will try to post some pictures of his big 3rd birthday.
We will be returning to LCPH on Monday. The first 4 days are a 24 hour infusion of IL-2-We are hoping that this first week will be relatively uneventful. The second week on the other hand will be very scary. We will keep you all updated. Thank you for your continued prayers and support!
With love, Debbie
Thursday, October 16, 2003 0:21 AM CDT Hello all!
We are all doing great and looking forward to the big day on Saturday. Matt has no clue but I know he will have so much fun!
I am a bit anxious with our upcoming treatment. The first week should be ok but the second is going to be very scary. Our friend just finished it and had a gran mal seizure, fluid problems, and was admitted to the PICU with breathing problems. Thankfully he is doing well now and is finally home. We will leave on Monday and start tx on Tues. at 9:00.
Lunch for life has made over $80,000 dollars so far. Please keep following through with your friends. We so need a cure!
Thank you to the friends and family who have been praying for Justin. Justin is finally comfortable. God has been so faithful.www.caringbridge.org/ny/justinarmenio/
The following is a note from Justin's parents:
Tuesday, October 14, 2003 4:00 PM CDT
We are truly humbled by all of your wonderful, caring and loving guestbook entries. We read them daily and find comfort and inspiration from all of you.
Justin is more comfortable now. He is sleeping much more, which is a very good thing. We finally got the meds and the doses right. I lay next to my sweet boy and wonder "is he going to leave me right this second?" Will it be soon? Will he go on for weeks? I wish I knew.
When Justin is sleeping, I find myself passing the time remembering all of our special moments... It makes me happy and sad at the same time.
Love and peace to all of you. Thank you for caring about our Justin so very much.
Saturday, October 11, 2003 4:16 AM CDT Dear friends,
I woke up in the middle of the night to find out that my friend Justin is not doing well. He is an adorable, sweet boy that is 2 years old. Please feel free to visit his website and post a message(www.caringbridge.org/ny/justinarmenio/. I am on my knees praying to God. I am terribly sad. Prayer warriors please be praying for this sweet child and his mom and dad (Susan & Anthony).
With love, Debbie
This is what his dad posted.
Friday, October 10, 2003 7:05 PM CDT
I am heartbroken to tell you that Justin has taken a major turn for the worse. He was not himself all week, but was still having good parts of the day. We were hoping this was a delayed reaction to the chemo. Yesterday, the day we were suppose to surgically place a port in his head, there was clearly something wrong. We did a CT scan of the body and it showed that his bladder was distended. A catheter was put in. We then noticed that he could not grip anything with his hands anymore. Then he couldn't walk, sit up, or pretty much move at all. He can barely speak. The cancer that had still remained in the spine has begun to spread once again, and there's nothing more we can do. God how I hate those words. We spent last night in the hospital, but came home today. Hospice is coming tomorrow. The doctor says he has anywhere from a few days to a few weeks.
Please pray that he does not suffer to much. Thanks to all of you.
Friday, October 10, 2003 2:38 PM CDT The current count for Lunch For Life is: $50,282.00!
LUNCH FOR LIFE UPDATE
Well, we aren't going to reach $10 million in 10 days, much to no one's surprise, I suppose. But what has occurred in these short days has been nothing less than phenomenal. We have received phone calls from as far away as Western Australia. They've also come from Geneva, Switzerland and the United Kingdom. The mail arrives in sacks, and the foundation office is getting so many calls they had to buy a new telephone! Donations are pouring in, and the momentum is building across the country and, obviously, beyond.
And while this effort is definitely about the money, for me it's about so much more. It's about giving hope to hopeless families. It's about giving purpose to grieving families. It's about unifying families in similar battles and dealing with similar heartaches. It's about fulfilling the personal missions of so many otherwise helpless parents, all of whom are struggling to make sense out of their child's fate with this horrible disease. Most importantly, it's about saving lives -- real lives of real children. They look just like your children -- angelic, healthy, happy. They're normal kids just like everyone else's kids...except for this monster that is inside of them. This monster can kill them, and does kill too many of them. It causes much trauma to the others and to their families. Yes, Lunch for Life is all about beating this monster. Which brings us back to the money. I wish it wasn't about money. I hate asking for money. But we, the PARENTS, have to fight for our kids because if we don't, no one will, so we have to ask for your money, and for the money of your friends, their companies...whomever will give so that our children have a chance to live. It stinks all the way around. But we have to do what we have to do. If I have to ask for your $5 (or more if you are so inclined) so that these kids can grow up, graduate from high school, live their lives, well, then I guess I have to.
So our Lunch for Life effort will continue beyond Day 10 because it has to. Remember, we as parents of these kids have to change the world. We may not have been able to do it in 10 days, but mark my word, we'll do it.
--Kristin Connor (mother to Brandon)
* online (it is a secure site) by clicking on this link LUNCH FOR LIFE
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108
Hello all!
Today is a beautiful day here at the beach. Matt is doing great and we are planning on going down to the beach with our buddies Spencer and Kerry.
I am trying to throw something together for Matt's birthday next Saturday. It will be low key but hopefully fun for Matt.
I will write tomorrow. Love you all! Love, Debbie
Thursday, October 9, 2003 6:48 AM CDT Hello!
Its so nice to be out of the hospital. We are enjoying this week and are making the most out of every day. Matt misses Thom though. Every morning he doesn't want Thom to go to work, if he hears an odd noise durning the day he asks me if daddy's home, and he refers to dad's place of work as daddy's house. You know its the sad truth. When we go to work daily work is our house. When you consider how much of your day is spent there. Thakfully, Thom is busy at work again. There was a lull for a while and the uncertainty of a pay check, so we try to be supportive of Thom's long hours away. Its difficult to keep a bussiness running when you are away for almost a year but thankfullly God has been good to us and we are most appreciative.
Matt is doing well. He still hasn't gotten back to the good eating but he is getting there. He is playing good and taking long naps. I am so fortunate to be able to be home with him. I get to have the time to appreciate all the little things he does-like yesterday when he was playing nicely on the couch. He had taken out some 100 matchbox cars and was playing and organizing them on the couch. Then he crawled up on my lap so sweetly and said "mommy I put all my cars away." Sure enough he put all of his cars away. Its such a simple thing but children can be so cute in wanting praise.
Matt is really into Lionel trains thanks to our friend the Caserio's who gave Matt a "I Love Toy Trains Video". Now Matt have 4 or 5 of the videos and is now telling us to go to the store and buy him a train. He still plays with his Thomas train but now has set his sights higher on the O scale trains. It looks like we may be in the market for a Lionel Train come christmas.
So, all is great here. We hope all of you are enjoying every day too. Please keep Justin, Spencer, Matthew, and Stefan in your prayers as they go through their treatments. In additon, please play for the 8 families going through the loss of their child with nb. May these families find peace in knowing that their children our without pain and peacefully awaiting Jesus's return. Thanks for all the support I couldn't have gotten through this last year without it!
Love, Debbie
Tuesday, October 7, 2003 11:13 AM CDT Dear friends and family:
As you know, our son Matthew has batteled through 12 months of aggressive treatmentfor Neuroblastoma III, and is presently doing monoclonal antibodies . Unfortunately,
the majority of children with this cancer do not survive. It is a rare and aggressive cancer and research money simply does not go in large quantity to rare diseases. There is currently a grassroots campaign underway started by parents to raise money for the Children's Neuroblastoma Cancer Foundation called "Lunch for Life". The premise of the campaign is that we ask people to donate $5,
the cost of lunch for one person for one day (more if they are so inclined,) as well as asking five others they know to do the same and so on. The goal is $10 million dollars. I have included a copy of a press release below so you can learn a little about the campaign and the CNCF before making a donation. Information on how to donate is found at the bottom of the press release.
Thank you so much for your consideration and may God bless you all,
Debbie Hume
============================================================
A CALL TO ACTION FROM PARENTS WITH A PURPOSE
It is October 1, 2003; a day that will mark a significant change in the world of neuroblastoma, the cancer that Matthew was diagnosed with. With your help we will work to level the playing field and give researchers the
necessary boost to conquer this terrible disease. We plead with all of you, that today you help our family and in so doing, the families of Neuroblastoma victims all over the country.
We are joining forces with other parents of neuroblastoma families to starta grass roots fund raising effort called "Lunch for Life".
The Goal: 10 million dollars in ten days.
The Action: We ask that you make a donation to the Children's Neuroblastoma Cancer Foundation in the amount of five dollars - just the cost of lunch for one day - right now.
Please do it for Matthew, for his family, for the thousands of parents crying fora cure, or do it for the thousands who are yet to be diagnosed. Do it because you are our friends and family. Whatever reason you find. It can be because of
the statistics - because neuroblastoma is greatly under funded. Do it because of our story. Whatever your reasons, please do it, and do it today.
Think of it as giving up one lunch this month for a cause that is important to someone who is close to you. We are only asking for five dollars that will be used for curative research. Hopefully, five dollars is an amount
that no one will miss but that could make the difference in thousands of lives. If you have decided that this is your cause, that you are inspired to do more, then please give now. Give up one lunch a month for the year, for the rest of your life, whatever your tolerance is to give to a cause
that you believe in.
Here's the powerful part of this effort. We also ask that you call 5 ofyour best friends. Friends that you can trust and people that will do this favor for you as you have done for us. Give them the information, tell them
the story, inspire them and ask them to do the same as we have asked you.
Ask them to call five of their friends and pass on the challenge. This will only work; it will only make the needed impact, if we go ten levels deep in this web of giving. If you can find more people to give, great, if not
that's okay. Some of you will contact many and for that we are truly grateful, but no matter what, we need you to be diligent. Please follow up with your five best hopes and keep the giving growing! We have to make sure that we inspire our five friends to follow in our footsteps. Pick five friends that you know will help and that will continue the effort. Follow up with them. Use this as your opportunity to stay in touch with someone that is close to you. Everybody must inspire the group that they contact. We know it is work. We know we are asking a lot. But this could do it. This could make the difference today, right now. Many of you have asked how you can help. Help us change the world over the next 10 days!
Your donations will go to research to find a cure for neuroblastoma. It goes to an organization that is lead by parents and medical professionals dedicated to the cause whose sole purpose in life is for the love of their
families, these children, and the cure of neuroblastoma. It is a tax-deductible contribution for you.
You can give directly to the CNCF at
www.cncf-childcancer.org It is a secureweb site.
Or, you can mail your check to this address:
CNCF
P.O. Box 6635
Bloomingdale, IL 60108
Or, You can call this 800 number and give your gift by phone: 1-866-671-2623
We can do this! It's not only about the five dollars; it is about your five friends. That is the tough part, but it will be what makes the difference.
We will be post the results on Matthew's website, and we'll list several other Neuroblastoma family websites for you to read, too. We will know how well this is working every day and we will make every effort to get the word out. Each
day the next level of friends should be taking the necessary steps to make the difference but it is up to us, right now, to get the ball rolling and ensure that it works.
From the bottom of our hearts, we thank you once again for helping us. Just imagine, we are now a part of changing the world, saving thousands of children's lives, and we did it for five dollars!
With Love and Hope and Immeasurable Gratitude, Thank You!
Debbie, Thom and Matthew Hume
www.matthewhume.com
Sunday, October 5, 2003 7:32 AM CDT Hello there!
We are so thankful for being home. This was a difficult round of antibodies. The first day was very scary since Matt was experiencing incredible pain for a long time. Finally the doctor's figured out the correct morphine dose and the rest of the week went a lot better. Matt also had problems with fluid retention and very low blood sugar. Poor guy didn't eat for 4 days so no wonder he had low blood sugar!! He is slowly starting to eat more. I can tell these next 5 months are going to be a struggle to keep him eating. Thankfully he so far doesn't need TPN (IV feeding) or the ng tube. We have the next two weeks off and then back to Lucille Packard's children hospital.
Matt is enjoying being home. He loves playing at the beach and actually loves playing inside the house. He was always an outside boy but now inside the house is his safe haven. Thank you all for you continued prayers! I am sending you all a big hug- I don't know where we would be without our faith in God and the support of our family and friends. Thank you!
Love, Debbie
Thursday, October 2, 2003 6:41 PM CDT Hello all!
Matt has just finished his last day of the antibody. Yeah! Now we get 2 weeks off until our next round. I just keep visualizing these antibodies recruiting other cells in the fight against the nasty neuroblastoma cells.
Hello again! Here's a note that my cousin made to e-mail her friends and family. If you get time it would be great if you can help. "Lunch for Life" is going on nation
wide. I wanted to do so much more but since Matt is in the hospital I wasn't able. The idea is to ask 5 people to donate $5 and to tell 5 more people. Then following up to see if your 5 people followed through. Any help I can get from you will be of great help!! Thanks! Love, Debbie
-----
Dear Friends and Family,
This isn't something I usually do, but this one is near and dear to heart -
it involves my family.
As some of you know, my little cousin Matthew is battling this horrible disease. As if traveling back and forth from Stanford to New York's Sloan Kettering for treatments isn't enough, Debbie (Matt's mommy) has taken on this fund raising challenge. In the attached e-mail from Debbie you'll find press releases describing the fund raiser and a link to the website of another child battling Neuroblastoma (her daddy started this fund raiser).
Think about it... what will you spend $5 on today? I would have spent $5 on take-out for lunch or junk at the convenience store. Instead I am brown-bagging it and sending my $5 to this great cause. I hope you can do
the same. If you can, here is the link to donate
https://www.cncf-childcancer.org/donation.asp
If you'd like to learn more about Matt, this link will take you to his websitehttp://www.caringbridge.org/ca/matthewhume/ . Feel free to read the journal entries, look at his beautiful little face, and please sign his guestbook.
Thanks for listening and for helping, if you are able.
Jeanine
p.s. An extra prayer or 2 would be great too!
Wednesday, October 1, 2003 12:53 AM CDT Hello!
Day 3 of the antibody and two hours into it. Matt is doing great. He is playing on the couch with his trucks and trains. Last night he even went for a little walk. He was so happy that his grandma Hume visited. We should probably finish about 3:00 or so-if all continues to go well. We will update later. Love, Debbie
Tuesday, September 30, 2003 2:23 PM CDT Hello from Hotel Stanford,
Thankfully today is going well. We are 2 1/2 hours into the infusion and so far the morphine is working. I guess most of the bugs were worked out yesterday. Matt is playing with his trains on the couch-ordering his mother and father around. We are at his beck and call and he is loving it. His heart rate is just now starting to creep up. We will update later. THank you for praying for Matt! Love, Debbie
Monday, September 29, 2003 5:20 PM CDT Hello there!
Matt started the antibody today at 9am. Its 3:15 and the antibody has just finished. The effects should be gone within 2 hours. Hopefully today was the worst day-since trying to figure out the correct morphine dose did not go well. Matt had a lot of pain for way too long. Towards the end his heart rate went way up and the blood pressure started to drop. He is ok but now we need to figure out a fluid issue. Matt is retaining lots of fluid and is not urinating. He is finally sleeping but I am worried about this fluid problem since tonight he will also need blood and tomorrow we will be doing it all over again. Please pray for Matthew. Love, Debbie
Saturday, September 27, 2003 0:11 AM CDT Hello!
We have some great news! Our buddy Spencer is in remission! Yeah! Its been 3 weeks and he is cancer/leukemia free. He finally gets to go home this Sunday. Figures the day we check in is the day that they get to go home.
So, I am involved in a BIG fundraiser for the Search for a Cure for Neuroblastoma. The Children's National Neuroblastoma Foundation is putting on a "LUNCH FOR LIFE". The concept is simple. You ask five people to donate their lunch money (5$) and then those five people ask five people, etc. This will go on for 10 days-starting OCT.1st. If you decide to help me you just need to ask five people and follow up with them to see if they were able to get five people. The checks and money will be a tax donation to CNNF. If you are interested please e-mail me. We will be in the hospital but I am still dedicated to doing my part. Your help would be greatly appreciated!
Matthew is doing great. Everyday he gets more energy. He is eating well and actually gained the weight back that he lost from surgery. Tomorrow we get to see a lot of our family members that I have not seen for over a year. We are so excited!!
Thank you everyone for your incredible support!!
Love, The Hume Family
Thursday, September 25, 2003 11:27 AM CDT Hi there!
Matt is doing so good. His eyes actually sparkle! He looks like his normal self but with brown crazy hair. He has started acting bad too. For instance he says, "Right now!!" and its not even in a nice tone of voice. He tries to be bad but it doesn't work. Yesterday, while at lunch with Spencer, Kerry and Brian, Matt decided to draw mommy's face. He actually drew two circles for the eyes and a happy face and then he told me to draw teeth. It was so cute! He was so proud of himself. Its the simple things that just make me so happy.
So, yesterday Matt and I made drove to Stanford. The doctors went over what exactly will be done. We will hopefully not be there for any longer then a week and then home. The biggest factor is pain, and fluid retention. Matt had an echocariogram yesterday too and the cardiologist said his function was good but Dr. Twist told us that his function numbers were down. Then on top of that Matt's right portion of the diaphragm isn't moving as well as the left. Possibly due to nerve damage from this last surery or the first surgery. I am praying that the nerve was traumatized by the recent surgery and that it will recover in time. We will get an x-ray on Monday to make sure his lungs are doing ok.
Treatment will start on Monday and go through Thursday. This antibody will be ch14.18-it isn't as scary as the one we get next round. Anyway, thank you all for your prayers! Matt is doing so great! Love, Debbie
Wednesday, September 17, 2003 11:49 AM CDT Hi there!
Yeah we are home. We can't begin to explain how happy we are to be home. Matt is doing great and has just about regained 100% of his strength back. The appetite enhancer seems to be working too. He has been eating very well. We are hoping to get him to eat enough so that he will gain back the 2 1/2 pounds that he lost.
We will be starting the human antibody at Stanford on Sept. 29th. Matt will be having treatments for about 1 week out of the month for five months. The unfortunate part is that our week is on all the holidays-Halloween, Thanksgiving, and Christmas. I am not looking forward to this treatment since it will cause Matt a lot of pain and there are a lot of new possible side effects. In addition, Stanford has not administered these antibodies before. One kid I know in N.Y. was put in the ICU so that he could be properly monitored. We will see what the doctors at Stanford want to do.
Yesterday we had a great day. Now that I think about every day, that we are home, is a great day. Anyway, Matt got to go down to the beach and play with his buddy Devon and Laurie. It was so nice! Oh how I miss those days. Its sooo nice to be home!!
Thank you all for your prayers! GOD is truly amazing. Our friend Justin, whom a lot of you have been praying for, has got an excellent response to his treatment. Spencer has been tolerating his treatment very well and is playing in the hospital-being his happy, loving self. And if you could see Matt you would definately be thanking God for all he has done! Love, Debbie
Saturday, September 6, 2003 8:46 PM CDT Hello loved ones!
I apologize for not being so good about returning messages and thank you's. My computer is finally working but unfortunatley all my e-mail addresses have been erased. So please leave your e-mail address-thank you.
Matt, my dad and I will be on our way to N.Y. monday-Thanks to Paramount pictures. We get to hitch a ride to N.y. with them. I am hoping Matt will be ok with us returning to N.Y.
We have tests planned for the 9th-12th and then we will start the antibody on the 15th. There is a small chance that we will still be able to do the clinical trial in CA. Thom has been bugging all the docters and of coarse all of them have said that we will not be able to get into the trial. Well Thom finally talked to the man who will ultimately decide-Dr. Anderson. Dr. Anderson was a very nice gentleman who says he will let us know on Tuesday whether or not there is enough of the antibody for us. Sounds promising. So there is a small chance that we will arrive in N.Y. on monday and turn right around and fly back home on Tues or Wed! Wouldn't that be awesome!
On a sad note, my good friend Kerri and Brian's son Spencer has just been diagnosed with Leukemia (ALL). Spencer was due on the same date as Matt-so they are the same age. All our friends are in shock that 2 boys, friends, could both get cancer. Sweet Spencer is at Lucille Packard starting treatment. Please keep both Spencer and his family in your prayers.
We appreciate all the prayers for Matthew and Justin too as they fight neuroblastoma.
On a happy note, today was an incredible beach day! Matt, Thom and I had so much fun on the beach. Thom of coarse dug a huge hole for Matt, Matt of coarse was covered with sand from head to toe. It was so nice that we could enjoy a day together before we leave to N.Y. Matt is doing great-now if we could just get him to eat!
Thank you all for the encouragment! Love, Debbie
Tuesday, September 2, 2003 9:33 AM CDT Hi again!
Well we tried our best to have a good time in New York. We went to the zoo twice, took a train to an aquarium in Conneticut, two boat rides and many subway trips. Oh and of coarse we went to the largest toy store in the U.S.-Toys R us and FAO shwartz too.
Thom stayed for 10 days and then had to go back to work. It was very difficult for Matt. We have been so fortunate that Thom has been able to stay with us. Now all the missed work has caught up. We pray that Thom will be able to visit us lots in N.Y.
Thankfully Charleen, my mother in-law, was able to come up to N.Y. to help with Matt. She was a huge help! Matt loved having his grandma around.
Our next step is a phase II antibody trial in N.Y. The docters do not know if this will benefit Matt at all. The treatment will be for 2 weeks on and 3 weeks off. There are relatively few long term side efects but the short term side effect is a lot of pain. Poor Matt. After the first treatment we will find out if it will work or not. If it doesn't then N.Y. has one other antibody trial that might work. If we choose this study then we will be back in N.y. on Sept. 9th. Sloan Kettering if not only the #1 place for neuroblastoma but the #1 place for a lot of cancers. The docters here are incredible! Thom and I know, without a doubt, that this is where Matt needs to be treated.
We are still trying to get into a human antibody trial in CA. N.Y. recommends the CA trial over theirs due to the fact that Matt's body will accept the human version. The author of the trial is trying to get us in even though the protocol says that Matt has to be between day 44-77post transplant and Matt is about day 150 or so. She says if there is enough antibody then Matt should be able to get it. We are hoping that she is able to get Matt in. If we do tx here in california then Thom will be able to be with us more. The last option is radiation. The side-effects of this type of radiation could mean short stature for Matt so I am looking into other radiation options. We are suppose to make up our minds today. So I am hoping that Dr. Yu from San Diego lets us know today if Matt has a chance of getting into her trial. We will keep you all posted.
We will continue to pray that one day GOD will cure Matthew. Until then I will take each day and cherish it. I wil continue to praise GOD for all he has done.
Love, Debbie
Saturday, August 23, 2003 12:38 AM CDT Hi all!
We received some not so good news yesterday. Pathology came back and Matt had one focal spot of live-active tumor. Its very difficult for me to imagine but I trust these doctors. Thom and I feel strong heartedly that God has helped us answer a big question-Whether or not to do more treatment. We know now that we will seek further treatment immediately. There are two possibilities: one is a vaccine trial at Baylor in Texas, and the other is an antibody trial that we can do at Stanford or another institution. We hope and pray that Matt will qualify for the antibody trial! We are sad that Matt has to go through more treatment but we know that this is the only way to beat this nasty beast.
We are hoping to leave the hospial sometime today. We will have a post-op check Monday and fly home friday. Matt really wants to go home and play with his trains! God bless all of you who are such prayer warriors. We are so thankful for all the encouragement. This is a long tough battle and I can't imagine going through it alone. Many times throughout the day I thank GOD for his amazing love. Love, Debbie
Saturday, August 16, 2003 6:43 PM CDT Hello!
Matt is doing very well. Basically Matt's doctor was completely done with Matt and talking to us when the power went out. Unfortunately Matt was stuck on the 5th floor so they had to take him down 5 flights of stairs-with the ventilator and all the other garb. Then they transferred to Cornell University hospital (PICU). Dr. La Quaglia took his time during the surgery and was very satisfied with the results. THe initial slides show no cancer-just like I told them! They still do not believe me-so we are waiting fo rhte final pathology later this week. The tissue was a lot larger then the dime size that Stanford described-in fact it was about 6 inches long and 2 inches thick. Anyway, Matt is still in pain and is still on oxygen. Hopefully tomorrow will be even a better day for him. Then maybe on Monday they will ambulance him back to Sloan Kettering.
Sorry for the short note. I am extremely tired and need to get some sleep. Love, Debbie
Wednesday, August 13, 2003 9:02 AM CDT Hello Loved ones,
Yesterday we went on a train ride to COnneticut. It was an hour long ride and Matt slept the whole way there. I am finallly getting use to using the stroller in the city-with all the stairs. I am thankful that my stroller is only 7 pounds! Anyway, we had a great time in Conneticut. It was nice to get out of the city. We went to an aquarium and then watched an IMAX movie about coral reefs. Matt loved the movie.
Matt is learning to eat and sleep on the go. Its kind of nice-maybe he will be able to do it when we get home too.
Only two concerns today. First,Two days ago Matt hurt his foot and now he doesn't walk on it very well. It appears like he is avoiding his heal. We are concerned because any bone pain is never a good thing with a cancer patient. I am praying that is just a bruised heal. One more concern is the darkness around his eyes which I think is from low hemoglobin/iron. His iron was around 10 but then they had to take a lot of blood for all the pre-surgical tests. They said that just fact that they took all the blood for he labs means he will need at least one transfusion during surgery.
Today we start Matt on all of his pre-surgical meds. We will do something fun today-maybe the zoo. Matt's surgery is at 7:45am. We will be at the hospital at 6:15. The doctor said that the surgery will take as long as it takes to do a good job. This surgery may even be a little longer then our first-due to the fact that the tissue is around and attached to the aorta and Inferior Vena Cava. Plus Matt wil most likely get intra-operative radiation after the surgical procedure-so that will take an additional 45 minutes or so. The radiation is pretty cool. They will radiate the surgical areas-so that if there are cells that we can not see perhaps the radiation will kill them.
The surgeon seems to be a pretty incredible guy. Not only does he have an great surgical reputation but you can tell that his heart is in it and that he cares about these kids. When he met Matt he asked him for a hug and Matt of coarse gave him a big hug. Please pray for Dr. La Quaglia. Pray that God guides his hands, eyes, and mind.
Thurs. and friday will be difficult days. Matt will be in the Presbyterian New york Hospital in ICU. Thom and I will need to take turns watching him-since they do not allow us to sleep in the room. We pray that matt has a quick recovery and the surgery is successful and that all the tissue found is ganglioneuroma or dead! Thank you all for your prayers. Please continue to pray for Justin and his parents too. Thanks also for signing Matt's guest book. Your encouragment means A LOT! Love, Debbie
Sunday, August 10, 2003 4:42 PM CDT Hi all,
We made it to the big apple. The flight was incredible. Matt totally behaved himself! He was a little angel. Of coarse it helped that Matt could get up and sit on the floor and play with his cars. The long flight went by very fast!
The Ronald Mc DOnald house is another story. Its dirty and stinky. I feel so bad for admitting it. So, I wen to the corner store and bought $25 worth of cleaning supplies. Now I am a little more comfortable but it still isn't very nice. In order to even be on the internet we have to use a calling card. Oh well no big deal!
Thom and I are trying to see if we can get use to the city. I have a hard time getting past the smell and the trash. Boy do I sound like a snob!!
I even tried to see the hospital and boy was that a fiasco. The security guard was not going to let me take a look at where matt would be staying. Well I made a fuss and eventually they decided to show me around. I was so close to getting on a plane and coming back to CA. The security guards and the information lady were not only not helpful but they were not very friendly. I keep telling myself we are here because Dr. La Quaglia is here!
Matt is enjoying the attention of both mom and Dad. We are also trying to work on the discipline. Poor Matt! Its so important for him to listen to us when you are in a big city with crazy drivers! Overall I think he is happy. He is already calling Ronald Mc Donald House his home. He is so cute!
Well I will try to update you all in a day or so. Take care. Love, Debbie
Tuesday, August 5, 2003 11:15 AM CDT Hey there!
So we have our flight plans to the BIG APPLE. We will be leaving LAX on a Merck Pharmaceutical corporate jet. We leave early Friday morning and arrive at Morris Town airport in New Jersey. Only one problem. We are to keep Matt quite for over 6 hours so that the CEO can work. Is it possible? We will try to keep Matt entertained.
We will be staying at Ronald Mc Donald House in New York City which is about 5 blocks from Memorial Sloan Kettering Cancer Center(MSKCC). Matt's surgery is on Thursday August 14th in the morning. We have other appointments the 3 days prior but hopefully nothing that is too difficult for Matt. We should be in N.Y. almost three weeks. We will continue to update you on how Matt is doing.
Thank you all for your prayers!
Love, Debbie
Sunday, August 3, 2003 1:04 PM CDT Hi there!
We had another visit with the doctor's at Stanford. All went well. Matt had his MIBG scan with general anesthesia. We will get the results of the MIBG on monday but we are not expecting anything different then the past scan. Thankfully Matt has maintained his weight and we did not have to put in another Ng tube in-YEAH! One more tube to take out of him and we will be tubeless! The central line will stay until we decide that Matt can handle blood draws-yuck.
We are trying to get everything ready for N.Y. Monday we should find out if we leave on thurs. or friday. Matt and I will be in N.Y. for almost 3 weeks and Thom will stay for the first 10 days and then go to work for 4 days and then fly back to be with us. We will be staying at the Rondald Mac Donald House which is supposedly 5 blocks from the hospital. Sloan Kettering does allow one adult to sleep in the hospital room so Thom or I will alternate nights staying with Matthew. I am praying that Matt doesn't have to stay in the Pediatric Intensive Care(PICU) for very long. When he is in the PICU we are not allowed to sleep in the room plus he may need to be intubated. We will not allow them to keep in the intubation tube for very long-last time I think Matt had it in for 3 very long days. We are praying that we can make the most out of this trip to N.Y. Despite the surgery we hope to have a good time. Unfortunately, Matt is still in isolation so he shouldn't be in public places and he will need to wear a mask in the hospital. We will bring our laptop computer so we will be able to write updates and correspond.
Thank you all for your prayers. If you could all see Matt. You would be able to see how awsome God has been to us. Matt is so happy and is a very active almost 3 year old. He is talking in full sentences and is getting clearer every day. I think he is going to have a great time on the plane ride-specially if we get to ride in a corporate jet where he can actually go up into the cock pit! Fun-FUN! We will keep you all updated.
Love, Debbie
Saturday, July 26, 2003 3:53 PM CDT Hi all!
My internet has been down for a week. Wow, I am amazed at how dependent I have become of it. Anyways, Matt is doing great. He is such a love-especially when he isn't on the accutane. I can't imagine a teenager on this stuff-watch out! Matt continues to sleep with us every night and he wraps his arms around my neck and gently touches my face. In the morning he just wants me to cuddle with him-it is the cutest! I realize that I need to enjoy these times since they children grow up way too fast.
We had a great time in Santa Barbara. The vacation ended up being a really short one but still nice. The ocean water was about 70 degrees and boy did I love it. Thom and I took turns swimmming in it. I wish our house had such warm water-I guess you can't have everything.
Then on Wednesday the 23rd we drove back down to Santa Barbara to celebrate my mom's birthday with my dad, and niece and nephew. We had so much fun on the beach and I got my warm water fix. Matt loved playing with everyone. Unfortunately, Matt's ng tube fell out while playing at grandma's house. So, we are trying to see if we can keep it out. Matt is eating so well! We will check his weight on Wed. July 30th, when we go to Stanford for Matt's MIBG scan. Hopefully he hasn't lost too much weight and we can keep it out! If he has lost weight then we will put that darn ng tube in while Matt is asleep for his MIBG scan.
Unfortunately, when we got home we found out that Matt's extensive immune system labs came back and they weren't as good as we thought. So, he is back into isolation. In addition, Sloan Kettering Hospital in New York called to tell us that we need to be up there by Aug. 11th. Corporate Angel Flight is thankfully going to fly us to N.Y. either Friday of that monday. I am not looking forward to this but I will be thankful to get it over with. I am fairly confident that the pathology results will be good but I guess we need to do surgery to find out for sure. Matt's type of cancer is so difficult to cure that we need to do everything in our power to stop it from coming back. We will keep you all posted on our trip plans to New York. It will be our first time to New York.
Please pray for Justin with neuroblastoma, and Jack with a brain stem tumor, who have both recently relapsed. We pray that God gives the families strength to get through this horror and that God continues to heal and cure these two boys. Thank you all for your support and prayers!
With Love, Debbie Hume
Wednesday, July 16, 2003 7:59 PM CDT Hello there!
Matt had an evaluation, by the county today, to see if he needed speech therapy or help in any other way. Thankfully they acessed him at his age or higher for language and speech developement. What a relief to know that he is doing well. I will still need to work with him but once the hearing aids are on he will probably be able to correct himself.
New York still hasn't received our scans yet-hopefully tomorrow. Then they will let us know what they think.
I am looking forward to Santa Barbara. Matt probably would rather stay home but I am sure he will have fun at the zoo and being with mom and dad.
Hope all is great with you! Love, Debbie
Tuesday, July 15, 2003 12:45 AM CDT Hello there!
Matt is doing great. He started his second round of accutane on friday and just now is getting some of the mild symptoms. Last round of accutane Matt's liver enzymes went sky high. Hopefully this time his liver will be ok.
Yesterday and today Matt is eating a lot-yea! I am hoping he will keep it up and then we can take out the feeding tube.
We will take a little mini vacation to Santa Barbara on Friday and Saturday. We are thinking of camping at Refugio (on the beach). There are so many fun things to do in S.B. We will let you know how it was.
On Sunday I found out that Justin, a little boy the same age as Matt and same diagnosis date, just relapsed. I had been corresponding with the family and feel so sad for them. I can only imagine what they are going through. Please pray for Justin and his parents.
Thank you all for your continued support and prayers. If you could only see Matt. He is running around like a two year old, bugging Lacey, and having so much fun. I thank God every day for his involvment in our life and for the many blessings.
Love, Debbie
Thursday, July 10, 2003 10:03 AM CDT Hi there!
We had our MRI angiogram and CAT scan on Tues. The MRI angiogram showed that Matt's Inferior Vena Cava doesn't have any tumor within it. The CAT scan showed us that the tissue is still on the bifurcation of the aorta/IVC and that there is another area of tissue left also. This new area can be seen on the last CAT scan but wasn't detected then. Both of the areas are not any larger, possible smaller, and will be removed with a second surgery. I am very confident that the tissue left is ganglioneuroma but we need to assume that it is active neuroblastoma. The scans were sent to Sloan Memomorial in N.Y. on Tues.
We got home Tuesday night about 9pm. At 12pm Matt woke up vomiting and with a very high fever. We immediatelly called all the necessary people and went our local E.R. Poor Matt had to have blood drawn from his arm and ports. Fortunately, we got to go home about 4am. His high fever continued until 8pm on Wed. and then went away. Today we will find out if anything grew from the cultures. Thanfully Matt got this flew now and not before. It looks like his immune system is working.
Today we are getting another hearing test. We will let you all know how it goes.
Love, Debbie
Tuesday, July 1, 2003 5:09 PM CDT DAY +96
Hi all!
Its Debbie writing. We, as a family, have had a great couple of weeks. Matt gives me so much joy in life. The other day we found out that he knows the alphabet song and knows the order of the alphabet. We tested him and were amazed that he knew what letters came next. He is a little sponge right now. He is also having fun with the whole potty training deal. He likes it so far and I am sure we are saving a lot of money-since we rarely need diapers. I Matt's favorites are playing with Thomas the trains wooden railway and as always he loves playing with his family and friends-the more the merrier.
My favorite part of the last few weeks was Wed., June 25th when we had an incredible beach day. Matt and I got to visit and play with Laurie and Devon and Thom even got off at 1:00 to go surfing. I got to play in the ocean too and even ride a wave in. We ended the day with a barbque. What could be better? Well, Thom's mom and cousin Chelsea showed up and even Uncle Keith. So Matt was beyond excited. We all had a great day.
I left for my Chicago trip Thurs. I don't think Matt really missed me too much. He enjoyed the extra company and attention. My trip was great. The doctors speaking opened my eyes to all the treatment options available if a relapse were to happen. It was difficult to listen to but the information will keep us aware and informed. Even more difficult was each parents story of their child. Their stories will be a part of me forever. On a positive note Chicago was a amazingly clean and safe city-with policemen on every street corner. I loved that the Michigan river ran through the city. My favorite had to have been their incredible aquarium! I have never seen such a huge place.
We finally have gotten an appointment time and date for Matt's MRI angiogram and CAT scan. On Tues, July 8th we will go to Stanford and Matt will be put under general anesthesia for the two scans. Then probably by Friday we will know if the great Dr. La Quaglia will do surgery to remove the small piece of tissue left. We will keep you all updated.
Thank you all for your encouragement, support and prayers. Have a great 4th of July weekend-I know we will!
Love, Debbie
Wednesday, June 18, 2003 11:55 AM CDT Hi all,
We have been doing great! Matt is taking his accutane orally with a little help from Thom. Thom figured out a way to put chocolate chips around the accutane. So far we have been lucky. Matt's lips are extremely chapped but other than a little peeling on his face, he is doing great.
For father's day and Thom's birthday we went to Squaw Valley in Tahoe. We camped the first night and then stayed in a hotel the next night. Matt loved all the construction going on. He loved all the tractors, bulldozers, and excavators. We enjoyed a bike ride, walks with the stroller, and Matt even got to jump on a trampoline. We appreciate all the little things. It was so nice to be able to have a family outing.
We also visited Thom's parents. Matt loves playing with them and feeding their fish and chickens. Overall we had an incredible long weekend. We look forward to more fun times.
Last week Matt also got to visit 3 of his buddies. He had a blast playing with them. Its been way too long since he has got to play with other kids. I know I was really excited for Matt-watching him play and have fun made me incredibly happy!
We will be traveling tomorrow to Stanford and may stay friday to do a MRI angiogram. New York wants this test before they tell us if they will do surgery or not. So we are getting closer to knowing if we are going to do more or not. Then next Thursday I am traveling to Chicago for a Neuroblastoma conference. ALl the leading doctors will be there. It will be the first time I am leaving Matt since his diagnosis-very scary but Thom's mom is coming down to help. Between Thom, his mom, and uncle Keith Matt will have a great time!
So all is going great here at the Hume household! We hope all is great for you.
Love, Debbie
Saturday, June 7, 2003 5:07 PM CDT Hi all,
We had our weekly visit at Stanford on Thursday. ALl went well. Matt's counts are still low but to be expected post trasplant. Guess sooner or later his bone marrow will be fulllly functioning and his counts will come up. His weight is still on the low side but he is starting to eat more. Thankfully, yesterday we gave him a sippy cup of pediasure and he ended up srinking 5 ounces in one hour-yea! Hopefully soon he will be able to "chug" his sippy cup like he use to. If we can get him to eventually drink 8 ounces three times a day then we can get the ng tube out. Then I think Matt would eat more without a tube down the back of his throat.
Our latest battle is tring to get Matt to take the Accutane. We have had so many suggestions but have not quite found out what will work for Matt. Today he called the huge gel cap an m&m. Maye he can chew it and we will give him m&m's? I am willling to try anything.
Thankfully Matt is happy and energetic. We are still trying to figure out what to do next. IN July we will do another CAT scan and MIBG to see if the tissure left still lights up. We will keep you updated and soon I will get some pictures for you to see. Thank you all for your encouraging words and prayers!
Love, Debbie & Thom
Sunday, June 1, 2003 6:34 PM CDT 66
It is so nice to be home! The beach has been incredible. Matt has thoroughly enjoyed being home. Every day is so much fun. He still can not get over that Lacey, our dog, is with us all the time.
Matt has lots of energy. He still gets stiff in the morning but we expect that to go away soon. He is off the TPN and is on the Ng feeding. Thankfully he is eating a little too. My goal is to get him off the ng in a month. If I could only get him to drink milk.
We go up to Stanford every thursday for check-ups. It makes for a long day but its worth it. We still haven't heard from Dr. La Quaglia. He should be phoning next week to let us know if Matt should have more surgery. As of now we are on hold. We should start Accutane Mon or tues-14 days on and 14 days off.
Thanks to everyone who helped out or came to the fundraiser. We heard that it was a lot of fun. I wanted to go so bad! I just knew that I would want to give everyone a hug and would probably catch something. Soon we won't have to worry so much. In all actuality Thom and I have been so lucky to have not gotten sick over the last 8 months.
Thanks be to God for Matt's health and incredible attitude. We continue to pray for God to guide Thom and I to make the right decisions for Matt. We praise God daily for all he has done. We miss you you all! Talk to you soon. Love, Debbie
Friday, May 30, 2003 5:12 PM CDT DAY 64
Hello all,
Matt is a bundle of energy! How I have forgotten how it is to have a crazy 2 year old. We have just moved back into our house and it is a disaster. So, now I will enjoy each day and slowly try to re-organize our living environment. Matt could care a less what kind of mess the house is in. He just wants to play at the beach, throw the ball for Lacey, and run around in circles. It is such a blessing to see Matt with his energy back. I can not wait for all of you to see him. He is the biggest love bug. He loves to give "big" hugs and kisses. I miss you all and can not wait to give every one a hug! Love, Debbie
Thursday, May 29, 2003 9:24 AM CDT My Son Matthew
My sweet child was almost 2 year old. Matthew was an outgoing, adventuous little boy with endless energy. Little did I know that my absolute horror was about to come true.
For about a month, Matt had symptoms that we now realize were related to the cancer. He would randomly vomit for no apparent reason. He would occasionally complain when we'd put on his pants. He strted asking me to hold him instead of walking on his own. I had noticed large blood vessels and spider veins on his abdomen, similar to when I was pregnant, but didn't think much of it. Yet, the most obvious symptom was the abdominal distentia (hard protruding stomach). I brought him to our pediatrician's office and unfortunatley it was put off as a stomach virus. When his stomach was starting to appear even large I insisted that ourdoctor see Matt. After palpating Matt's abdomen our doctor immediately told us the possibilities, non of which were good.
After almost two weeks of endless exams and test Matt was diagnosed with Neuroblastoma. There are about 500 cases a year in the U.S. Neuroblastoma accounts for 10f childhood cancer. One third of the neuroblastoma cases are labeled as unfavorable and are extemely difficult to cure. Unfortunatley Matt has the unfavorable type. The cance started from immature nerve cells in the adrenal gland and mutated into cancer cells. Matt's tumor was considered "enormous', encompassing the right kidney, adrenal gland, part of the liver, and a small part of the diaphragm. We were put on a clinical trial that uses the heaviest possible doses of chemotherapy, surgery, stem cell transplant, radiation, and Accutane.
The first three months were the most difficult. I was scared beyond belief. My horror was minor compared to my Matt's anxiety. Matthew was expressionless and wouldn't speak. It was as though his body was shutting down. It hurts me too much to think about that time period.
Thankfullly Thom and I had bought a eurovan camper a year prior. We were able to alternate sleeping with Matt and sleeping in the van. We were so fortunate to both be able to be with Matt.
Currently Matt has finished the radiation and is starting his six months of Accutane. We have gotten our results from the MIBG scan (a nuclear med scan) and unfortunately there is still a slight uptake in an area where the surgeons had to leave tissue. The pathology of the tissue was benign, differentiated neuroblastoma tissue(ganglioneuroma)but because this is such a difficult disease to cure the doctors do not want anything left. Presently we are consulting with the most experienced neuroblastoma surgeon in New York. I am faily confident that he will recommend surgery. In addition, we are still contemplating another clinical trial involving monoclonal antibodies, also in New York. We are continuing to ask God for his guidance on these difficult decisions.
I now have a different way of seeing and enjoying life. Each simple and ordinary instant at home is a fantastic moment of happiness. I know that the disease can reappear one day, but I wnat to forget that and take joy in each day we are togehter as a family. Matt is my champion, my survivor, and he has fought this cancer like a lion. Iknow some irrevesible damages have been done to his body, but he is alive, he is physically well, and a contagiously happy little boy. Now we pray that Matt will never, never go through this again! I thank all of you for your support and prayers God has been so faithfull! With gratitude and Love, Debbie Hume
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