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| August 2001 Sorry I haven't updated for awhile! Matthew continues to do very well although he still has his share of problems. In June he had another episode of Croup although it was much less severe than other episodes this year. Matthew had his 24 hour Ph test and it went much better than I thouht it would. He gagged a little when the NG tube went down and cried for a minute or two but then he did great with it. He actually got to where he knew when to push the little button every time he ate, drank or coughed. At first he didn't want to go outside with the tube in his nose but then his friends said it wasn't a big deal (God Bless them!) and they all went outside and played like nothing was different! Although one of the neighborhood Dads asked Matthew if his cancer was back (grrr). Anyway, to make a long story shorter, the Ph test was fine so he does not have GERD and when we went in to see Dr. Larson in July Matthew was doing so well that we decided to cancel any plans for a bronchoscopy at this time! He is also off the Rhinocort nasal spray and hasn't used his nebulizer since his last croup attack in June. So whatever this is (and remember it's not allergies because he tested negative) it is definitely much better during the summer. Makes me wonder if we should consider moving! In July Matthew, Adam and Mommy went on an impromptu trip to visit Grandma & Grandpa Palmer and Aunty Adrienne and Uncle Steven in San Diego. We had so much fun! We just relaxed, sat on the beach, went to the lake and rented a boat, played in Grandma's beautiful backyard, and just visited. It was nice and relaxing and watching Matthew and Adam playing for hours in the surf and sand did my heart loads of good. I will never forget those moments...they were truly golden! As I am writing this, Matthew is in Montana at Camp Mak-A-Dream for kids that have or had cancer. He was flown out there by a volunteer pilot from Air LifeLine.....thank you so much, Mark! If it weren't for him we wouldn't have been able to afford the airfare right now so Matthew wouldn't have been able to go to camp. I miss him SOOOOOOOO much and can't wait until he gets home so he can tell me all his great camp stories! I just got off the phone with their office (gotta check up on my boy) and they said he just got done fishing and they are going on a camp out tonight. They said he is having a great time and that he is so cute (of course!. After Matthew gets back home all three boys will spend several days at their Aunt and Uncle's house while Chris and I go to Las Vegas for a videography expo. So right now everyone is healthy and having fun...life is just really, really good! We are very blessed! May 2001 5-22-01 Well alot has happened since my last update. Matthew has had two more episode of croup since I last posted. He went in for allergy testing which showed no allergies at all. The doc we saw was recommended by the ER doc at Mary Bridge. I was excited to see this doc because not only is he an allergist, he is also an immunologist and a pulmonologist...possibly just the combination we were looking for? His name is Dr. Larry Larson and he is wonderful! He spent five hours with us on Matthew's first appointment!! He did extensive allergy testing (a bunch of scratch tests on his back) which were all negative (in other words, Matthew is not allergic to anything). Dr. Larson also did pulmonary function tests (PFT's). These are the same tests that Children's keeps saying are "inconclusive". Well, here is the difference...Dr. Larson's office has this computer program that gives the kids an incentive to keep blowing in the machine. Matthew got to blow down the Three Little Pigs' Houses and did really well! Well, actually his lung function was horrible, but he was able to reproduce the same results 3 times in a row with no problem. They gave him an Albuterol nebulizer and then did the PFT's again which showed some improvement. They make an estimate of what the child's predicted lung volumes should be based on their age, height and weight. On the first test he scored anywhere from 75% to 25% of the predicted volumes, so he was definitely imparied in the air exchange department! He also had packed sinuses that the doc wanted to treat. So he sent us home with a new prescription called Advair (which wasn't even available on the market yet!) and some Rhinocort (nasal steroid) and a nebulizer with a script for a bunch of Albuterol solution. Despite these new meds he had another croup episode. I didn't have to take him to the ER, but the stridor lasted until mid-morning so I called Dr. Larson's office and took him in. Dr. Larson was actually out of town so we saw one of the other pulmonologists (there are three of them at this practice). I insisted that they do an x-ray of his neck and sure enough it showed a narrowing of his trachea. The strange thing was that his PFT's were much better than they had been three weeks earlier. So this led us to figure out that he has asthma in addition to some sort of problem that is causing recurrent spasmodic croup. So the new plan was to keep up with the treatments and keep our follow up appointment with Dr. Larson on May 8th. At least Matthew was seen by the doc at the end of one of his croup episodes! When we went back in on May 8th, Matthew's PFT's were almost all normal!! I was completly blown away but Dr. Larson had been confident that the Advair would kick the asthma in the butt...he was right! I love that med...it's so easy...just one inhalation once a day. There is no taste, and Matthew says he hardly even feels it! But the best part is that it is working! So for the croup, Dr. Larson suggested we start with a 24-hour Ph test to see if he has gastric reflux. If that comes back OK the next step is to do a bronchoscopy to visualize his airway and do a "wash" of his lungs to see what comes back. So we just finished the Ph test today. Matthew had to have an NG tube that has a probe attached to it down his nose. Then there is a little computer the NG tube is hooked to and you push buttons every time he coughs, eats, gags, lays down, etc. He handled it like a pro! He cried and gagged when the tube first went in but he got to the point where he went outside and played with his friends and was pushing the right buttons at the right time. What a brave little boy! Here are some pictures. We won't have those results for awhile and then we meet with Dr. Larson in June after all of Matthew's CT scans at Children's. I decided to transfer his pulmonology care to Dr. Larson permanently. I am very happy with him, his office, and his staff. More updates later! March 2000 3-26-2001 "Today we went to the hospital that Mommy works at and I went to the x-ray room. I had to drink yucky strawberry stuff really fast while I was standing on a funny table and the doctor took pictures of my chest and stomach. It didn't hurt and was sort of cool because I could see my stomach on the TV! Then the table laid me down flat and I had to roll around alot on the table so the doctor could see my stomach different ways. The doctor said I did a good job. It was very short and didn't hurt at all. Then I saw the Emergency Room where my Mommy works and then we had some breakfast. I chose Fruit Loops, rootbeer and a green apple!" Matthew's Upper GI test went well today. He didn't have it at Children's which was sort of nice because we didn't have to drive all the way to Seattle and fight traffic. All in all it only took about 20 minutes...including waiting in the waiting room! Matthew followed the instructions beautifully...the doctor and x-ray technician were both very impressed! Thankfully it showed no reflux or anatomical abnormalities, which Dr. Ramsey was looking for to see if that could be causing the chronic coughing. But of course that means we still have no answers and the cough is still a mystery. A few nights ago Matthew woke up again with the croup...and I was at work. Chris was pretty worried but Matthew was breathing OK...just more of the barking cough. I think it was very unnerving to Chris. Every time it's happened I've always been home and he relies on me to jump into action and take care of it. So we went over what things are life threatening and how to use the EpiPen, etc. This time the "croup" only lasted a day and now his is back to his regular daily cough. It is definitely worse with temperature changes (i.e. coming into the warm air from outside where it's colder). It will be nice when/if we ever figure out what this is. But I'm at least hoping that as the weather gets nicer the coughing episodes will be less frequent. Grandpa Jack (Chris' Dad) sent us a beautiful drawing he did of Matthew with our kitten, Noel. Click HERE to see it. If you are interested in having him do some art for you, let us know and we will get you in touch with him. 3-13-2001 Things are going really well for Matthew and our family, but we are still trying to figure out this coughing thing. He had another scary episode of croup in January. After the croup came and went several times I finally took him to the ER at Mary Bridge Children's Hospital (which is part of the hospital that I work in) and he was given a racemic epinephrine nebulizer and some dexamethasone (a steroid to help reduce the swelling in his airways). He felt much better after the meds but was very scared to go to sleep for weeks after that. He wanted to sleep on the sofa which is right by my bedroom. His room is downstairs and I think it really scared him to have to climb the stairs when he couldn't breathe! I had nightmares for several nights of finding his body on the stairs in the morning...ugh! The following weeks were spent counting how many times he would cough in a minute (up to 24 coughs per minute!) and playing around with the nebulizers. I finally decided that the Flovent wasn't working and took him off that. The Albuterol seemed to work nominally when he has real coughing fits but doesn't completely take it away. I started keeping a "cough journal" to see if there is any pattern. The only pattern I can really find is that he seems to cough for 3 weeks on then off for anywhere from 1-3 weeks which just doesn't seem consistent with asthma or CHF. As of today, he has not really had any coughing fits for almost three weeks! But being the mom that I am who has to have answers, I called Dr. Freidman who is in charge of the oncology late effects clinic at Children's and whined to her. I am concerned about Matthew being scared and him missing school from being sick. I am also just tired of really not knowing what is going on with him. So she called the Chest Clinic and we had an appointment for further follow up within one week! She is awesome! Dr. Ramsey at the Chest Clinic spent much more time with Matthew this time. She also voiced concerns about the quality of life issues and said we need to get to the bottom of this. He did PFT's which showed mild asthma but was unable to reproduce the same results three times in a row so they are still calling it "inconclusive". After telling her about the "Cough Journal" I've been keeping Dr. Ramsey agreed that this sounds really strange and she wants to see if this could be an upper GI thing...more specifically if he has reflux that could be causing the coughing and/or any anatomical abnormalities so he is going to have a barium swallow upper GI series done in a few weeks and she wants him to be tested for allergies. She also wants him to have a CT of his sinuses in June when he has his next set of CT scans. Wouldn't that be great...if for the past three years he has been coughing and having croup from a stinking sinus infection....and here I've been stressed out about pulmonary fibrosis or congestive heart failure! The chemo-mom and ER nurse in me just seems to look for the worst first! Anyway, Dr. Ramsey called Matthew's case "challenging" but said it is imperative that we "get to the bottom of this". She prescribed an Atrovent inhaler to replace the Flovent to see if that works better with the Albuterol when he has an acute attack. She also prescribed an Epi Jr. pen which is a shot of epinephrine in case he gets another bad case of the croup again. The epi helps open up occluding airways. The only catch is that if I use it on him I HAVE to call 911 (some law about it). Crazy, huh? So I'll try not to use it unless he turns blue again! So my little guy has appointments for an upper GI, allergy testing, and to see the ENT doc this month. In June he will have his sinus, chest, abdomen and pelvis CT scans, an echocardiogram (to check his heart), lab work, and will see both Dr. Carpenter and Dr. Friedman in oncology and Dr. Ramsey in the Chest Clinic. Now that we are in Tacoma, that meants LOTS of miles on the van! Adam will also see the ENT doc the same day as Matthew to evaluate his hearing and speech. I'm concerned about the bifid uvula he has and how it is affecting his speech. Matthew continues to LOVE school. He just got a Citizenship Award in front of the whole school...he was very proud of himself. He can now count to 100 but still needs alot of work on writing letters and numbers more clearly. His teacher just adores him! :) We are trying to figure out how to get the whole family down to San Diego soon to see my parents. Chris really doesn't want to drive but the airfare for all five of us is over $1,000! Yikes! But it would be nice to see some sunshine! Of course my mom keeps saying, "If you just moved somewhere sunny then Matthew wouldn't cough so much!". He he... I will update on test results when they start coming back in! December 2000 12-25-2000 Today was the best Christmas ever! All the kids are healthy, we are in our own house, have a new kitty, life is grand! Mom is sick as a dog with bronchitis, but otherwise everything was perfect! Uncle David, Aunt Linda and cousin's Thomas and Joshua came over for Christmas dinner tonight and we had lots of fun showing off all the new toys and stuff! We have so much to be grateful for! On Christmas Eve Matthew and mom spent lots of time talking about Jesus and God and what Christmas is really about. We also talked alot about angels and some of the kids we miss who are now angels. I hate alot of what caner has done to our lives, but it has also made every day more special and days like today, Christmas Day, even more Holy and magical. 12-21-2000 Matthew went to his appointment at Children's Hospital's Chest Clinic today to get evaluated for his chronic cough. They think he has "variable cough asthma" and put him on a daily inhaler of Flovent with an Albuterol inhaler to use as needed for cold air exposure or exercise induced coughing. He tried real hard to do the pulmonary function tests but they didn't think the results were accurate. If you ask me, I think the respiratory therapist could have done a better job and been a bit more patient then Matthew probably would have done great. He was trying very hard to do a good job. Anyway, the docs in the Chest Clinic were great and they want to follow him closely. I was very happy with their care. We will go back there in 4-6 months or sooner if these inhalers don't seem to be making a difference. Matthew is already adjusting well to taking his inhaler everyday. He says it tastes a little funny but he's a trooper! 12-18-2000 Today the boys got a new kitten! Her name is Noel and she is two months old. You should see them with her...she is very playful and the boys just laugh and laugh playing with her. She is our family Christmas present which we got a little bit early. Click here to see a picture of Matthew with Noel! 12-16-2000 We had another one of those "croup" scares in the middle of the night! Matthew came pounding on the bedroom door unable to breathe with that horrible stridor. I rushed him outside into the cold air which helped for a little while but then it came back again two more times. After an hour and a half of that I decided to take him into the ER where he got an epinephrine nebulizer treatment and some dexamethasone (a steroid to help reduce the swelling around his vocal cords). He has been fine since, thank the Lord! Poor little guy was telling me to call 911 inbetween gasps of air...he was really scared and thought he was going to die! I hope we get some answers as to why he is so prone to respiratory infections at this appointment at the Chest Clinic on the 21st. 12-12-2000 Matthew had his2-1/2 year off treatment scans today and they were totally normal! It was somewhat of an emotional day as Matthew had a hard time before his scans again with the crying and screaming "I HATE the hospital!". But he got through it (he tried Green Apple Soda for the contrast this time...worked well!) and now Dr. Carpenter wants to try going to every six months instead of every three months...I think this is a good idea considering how hard it is becoming for Matthew. This will take some getting used to but it is definitely a step in the right direction. For the first time in almost a year we went down to the inpatient Oncology floor and Matthew got to see three of the nurses who took care of him when he was on treatment...including Casey, his favorite nurse, and he gave them his famous "squeezy hugs". November 2000 11-16-2000 Matthew is 6 years old today!! Can you believe it?? Five years ago today we turned our baby over to God and to a skilled surgeon to have his first tumor removed. What a dark day that was...and we had a very hard time seeing into the future for a bright and joyous day like today. We are the luckiest family in the world! I wish I could put into words what this day means to our family, but the right words just escape me.... 11-19-2000 Matthew had his birthday party today. I think there were about 10 little boys rampaging through the house today! We really went all out with decorations and balloons and everything with a Hot Wheels theme. The kids tore apart the little red race car pinata and made a HUGE mess! It was almost surreal with Matthew blending in like a normal kid! He got lots of neat presents which we absolutely appreciate. I think his favorite is the scooter/skateboard. He's on it everyday even though the cold air makes him cough like crazy. I have to keep an eye on him though to make sure he doesn't forget his helmet that Uncle David & Aunt Linda got him! We are looking forward to many more birthday parties like this one! :) 11-21-2000 While everyone (including us) seems to be glued to the TV watching the ongoing Presidential Election battle, Matthew has been coughing his brains out. This is the third winter in a row! I never really wrote about it here before but I'll give you a quick synopsis. Last year I brought his coughing and shortness of breath to the attention of Matthew's oncologist who then checked his CT scan for any evidence of radiation induced pulmonary fibrosis (scarring of the lung tissue from radiation, which can show up months to years after radiation) and his heart to make sure this was not related to congestive heart failure from the radiation and cardiotoxic (heart damaging) chemotherapy drugs he had. Thankfully both his lungs and heart looked fine at that time but he will still need continued monitoring for those potential conditions. Dr. Carpenter thought maybe he had asthma and prescribed an Albuterol inhaler which actually seemed to make him cough more so we stopped that. By spring he seemed fine again. Now with the wheather turning cold, he once again seems to cough more and more. One day last week, I counted him coughing 24 times in one minute! His cheeks, lips, and ears turn bright red, he says his chest hurts, and then his poor little eyes tear up from so much coughing. He seems to get it from being outside in the cold air, at night, and after running around alot. So today I called Dr. Friedman, who is the physician running the long term care clinic at Children's. Her focus is on the late effects that treatment has on cancer kids. She said it probably could be asthma that is a result from his treatment or it could possibly (please God, no) be pulmonary fibrosis. She looked at his last CT scans from September today and said his lungs looked good but sometimes the effects of the problem will show up before the scarring shows up on scans. Hopefully that is not the case and it is just the asthma scenario. She is going to make a referral for Matthew to have pulmonary function tests done and to see a pulmonologist sometime after Thanksgiving. Hopefully we can find some answers and get him some relief! In the meantime we are looking forward to another wonderful Thanksgiving...God has truly blessed us with much to be thankful for. I can't help but think of all the people we know who will be missing their children at their tables this year. We are so very, very lucky and we really cannot complain about any of these late effects! And of course every year at this time we always think of the many wonderful people who made sure that we were able to celebrate the holidays by bringing us Thanksgiving dinner and Christmas gifts. We are financially not in the position to return that favor to others yet this year, but we are looking forward to spreading that same love and joy next year. October 2000 10-20-2000 We just got home a few days ago from a wonderful and much-needed vacation! Thanks to the Madison Hotel (where Chris works) we were able to go to DisneyLand for four fun-filled and sunshiney days! We had so much fun and we did not mind standing in line this time! :) We drove down there non stop...took 18 hours...then we went straight to DisneyLand so I think Daddy and Mommy didn't have any "real" sleep for 1-1/2 days! But everyone was having so much fun that it didn't even matter (except for the time when we lost Adam for 30 minutes and had all the security people looking for him!). On our last Disney day, Grandma & Grandpa Palmer & Uncle Steven joined us then we drove down to San Diego to see their new house and to celebrate Auntie Adrienne's 25th birthday. Their house is so beautiful and the wheather there is glorious! Then G&G Palmer drove up with us and we stayed overnight in Monterey on the way. Beautiful place! G&G got to see OUR new house and some of the sites around here. It was so much fun!! Finally, a vacation that has NOTHING to do with cancer! 10-31-2000 Matthew was a firefighter for Halloween today! (Thanks to Grandma & Grandpa Palmer for the costume) Amazingly, it didn't rain like it usually does on Halloween. Matthew had a great time with his brothers and neighbors, even if he did poop out quicker than the others! I remember three Halloweens ago when he was still on treatment and bald as a pingpong ball...he was dressed as Winnie-The-Pooh and I had put yellow face paint all over his head. He was soooo cute! We went to the hospital to trick or treat and when one of the nurses saw him, she said "Oh my gosh...Matthew is jaundiced!!" Poor gal almost had a heart attack! Just cracked me up! It was so nice to have Matthew be among the "normal" kids this year, and no one could tell everything he has been through. It's a weird feeling. September 2000 Childhood Cancer Awarenss Month! - click here to get a gold ribbon pin! 9-26-2000 First, just a very brief reminder of Matthew's cancer history. He was diagnosed with Stage 3 Wilm's tumor at age one then relapsed at age 2-1/2. Part of his tumor looked like renal cell carcinoma for which there is no treatment protocol in kids (especially for metastatic disease), but they don't really know for sure what it was, just some weird cancer. So we went from a 90-95% cure rate to "we don't know what to tell you". So Matthew goes in every three months for CT scans and blood tests. Today's checkup was 2 years and 3 months since the end of his relapse treatment. Almost EVERY time we go in for scans there is some sort of scare. I HATE scan day. However, Matthew always handles scans very well. Until this morning when he broke down crying and screamed, "I HATE CT scans, I HATE going to the hospital, I HATE cancer!" It just about broke my heart. For the last year we have let Matthew pick out whatever pop he wants to drink the oral CT contrast in (it's very yucky tasting stuff). When we showed up this morning, the CT tech said, "Hi Matthew, what kind of pop did you bring this time?" He had picked out "Blue Bubble Gum Soda". Yuck! It was VERY strong stuff and it must have covered up the contrast well because he gulped it all down in no time! Amazing! He usually doesn't flinch when he gets IV's. Actually he amazes me how he just sits there and watches with so much interest, and usually they have to dig around for a vein because his poor little veins are shot. But this time he did start shaking, closed his eyes, and later told me "I almost cried, mom!" What a trooper! After his scans we had about two hours to kill so we went to Toys R Us and got a special treat and then he and I had a nice lunch together. Just the two of us. When we got back to clinic we found out that his blood counts are phenomenal! Dr. Carpenter remarked, "It's almost as if he had never had chemo!" His scans were great, his checkup was great, and I am such a happy camper! I smiled the entire hour long ride home. I just wish Chris could have been there (he had to work). It was such a nice day...hard to believe I am saying that about scan day! I really can't describe the emotions I had today. It was strange being in the clinic and not knowing any of the parents or kids there. I wondered to myself about each of them and I marveled at the fact that none of them knew how awesome Matthew is doing after all he has been through. I wanted to shout it to every parent there, give them each a hug and tell them, "YES...the battle CAN be won!" I am so thankful for all that we have been through and that we are fortunate enough to be among the lucky ones who have made it. We know too many people whose lives are torn apart because their children have died from this dreaded disease, so we realize just how lucky we are. Matthew will still be on three month scans for a total of five years and the doc says his biggest concern is that he is at high risk of developing AML (Acute Mylegenous Leukemia) so he wants to continue to watch those blood counts. But as I drifted off to sleep last night and said a prayer (OK, begged!) for clean scans today, I almost felt as if God gently put his hand on my shoulder and whispered to me, "Have faith, he will be OK." It gives me chills just thinking about it! Are you ready for these blood counts? Hct 43.9, ANC 3196, Platelets 320K....amazing! Thank God for all those people who donate blood so this little guy could some day make his own! Can't believe this is the same kid whose bone marrow was almost completely depleted (without stem cells harvested!) and who earned the nickname "Platelet Boy"! Today was the best day of my life! 9-11-2000 Well, it's been a long time since an update...guess that's awesome news, huh? Matthew is doing GREAT and our whole family has been very busy doing "normal" family things. Mom started a new job, our family moved and bought a house (can you believe it?) and Matthew started Kindergarten! I keep pinching myself. Life is just so good right now that's it's almost unbelievable. Let me tell you that in May 1997, when Matthew's cancer relapsed, I never thought we would see the day that Matthew would head off the school. And we are just so, so blessed that he has been attending this past week as a "normal" kid! He is progressing and growing so well...as a matter of fact, no one at his school even knows about the cancer! Of course I will tell them so his teacher can be on the lookout for any potential learning difficulties and because of his hearing loss, but for now it's just wonderful to see him blend in with everyone else and be just perfectly normal. Anyway, I could go on and on about it, but I won't! Matthew also went to the dentist for only the second time ever and had no cavities or any other problems. The dentist was amazed considering what a young age he was when he first started chemo. Actually, all three kids had no cavities! It's was Adam's first dental visit and he was scared to death! He thought it was like being in the hospital "like Matthew" and that he would have to have a bunch of owies. Poor guy! But finally with LOTS of coaxing, he did well (except when he pit the flouride treatment all over the hygienist!) Matthew has scans on September 26th so please keep him in your prayers and we will keep you posted. We are also heading to DisneyLand in October for a much needed break...of course we aren't looking forward to the drive! Oh well, it will be fun! May 2000 Matthew's two year off treatment checkup was totally uneventful (geez, that doesn't happen often around here!). His scans were totally clear and he is doing great!! Next scans are in September. So now he is off to Grandma and Grandpa's house in San Diego with little brother Adam for a few weeks while Mommy finishes up an ER residency program! It's so nice to post such a short and boring update! :) February 2000 2-22-2000 I think we need a vacation! I was woken up at 5am this morning to Matthew pounding on my door. It took me all of two seconds to realize he was in respiratory distress....he had terrible stridor (if you've heard it before, you know what it sounds like but basically it's when the airway is becoming occluded for some reason and the air can barely get in) and he was turning dusky colored, vomiting mucus, and he had huge retractions (where the muscles suck in under the sternum and between the ribs because they are trying so hard to get air in). I immediately called 911 and was dressed and ready to go in 30 seconds flat. I took Matthew downstairs and opened the door for the fire department...they were there in minutes (my mind at this point is screaming that he will need to be intubated) and his breathing suddenly got better! His initial pulse oximetrey reading was 93% and quickly went up to 100%. Apparently when the cold air hit his throat it made the swelling go down so he could breathe. I couldn't help but wonder what his pulse ox was when he was upstairs....Thank God I opened that door when I did because any longer and things could have gone from bad to worse. We decided he was fine and stayed home and within an hour he was laughing and jumping around like his normal self. It's sort of funny that this past Sunday we decided to visit our fire fighter friends who work the "C Shift" that had come out when we went to Children's by ambulance for sepsis when Matthew was on treatment. We hadn't seen them in over 18 months! These guys said "Well, we are with the "A Shift" and whatever the C shift did for Matthew, we'll top it!" So they promised to take him out on the fire boat some time! They gave him a fire truck that makes a lot of really loud noise and we told them that we don't want to have to meet the "B Shift"! Nothing personal, it's just a mom really doesn't need to know EVERY fire fighter in town, does she? :) 2-6-2000 Geez...when will these scares stop? I was driving to work at 7:30 this morning when I got a call from Dr. Carpenter. Now don't get me wrong, he is a great doctor and we love him like crazy, but the last person I want to hear from the day after scans is him! I can't even describe the feeling in the pit of my stomach and the instant fear that crops up. He said the formal radiology report found "something" in his groin area and he wanted us to take Matthew back in right away so he could check it. He said it could just be a lymph node (to which I replied "I've heard THAT before!") or it could be a testicle that decided to take a hike north for awhile. Worse case...the cancer could be back. So to make a long story a bit shorter, he found two identical lymph nodes on either side of his groin. Symmetry is a good thing in this cancer game because it usually means it's just normal lymph tissue. So, it's not a relapse, just normal stuff, and a few gray hairs for mom and dad. Dr. Carpenter said he doesn't need to be seen for another three months. Whew! 2-5-2000 Matthew went in for his 21 month scans and they all look clear and his blood counts are all like a "normal" person's! Dr. Carpenter and I had a talk about the future and his exact words are "I think he's fixed!" But because he is a relapse kid and his is at risk of developing secondary cancers (from all the chemo and radiation), he still has to be checked frequently. Technically he is considered "cured" from Wilm's tumor at the five year mark. So three more years to go (+/- a few months) and we will be celebrating with a huge family trip to Disney World (and we will gladly stand in line this time!). 2-5-2000 The world is filled with a little less sunshine today because our beautiful friend Mikayla died. She was surrounded by her family and she went peacefully. We know she is no longer in that excruciating pain, and we are rejoicing for that, but her parents' and siblings' journey with greif has only just begun. Please go look at her link as I've added a poem that her mom included in her service. I already miss her so much... January 2000 1-18-2000 We went to Children's today for Matthew's CT of his ear but the doctor said it's looks 100% better! I am so relieved! Chris said he knew all along that it would be no big deal but that cancer mom in me still goes through major panic whenever it comes to Matthew. He wants to see Matthew again in two months to check it again and to re-test his hearing to see if the hearing loss has stabilized. What a relief! So now we are getting ready to go on our trip to San Diego. Mikayla is still fighting to hang onto every ounce of life she can. Please pray for her peace and comfort as she passes into Heaven and please pray for strength for her family as they face the worse journey a parent can imagine. 1-10-2000 Matthew lost his first tooth today! I promise to take a picture of him with the hole in his mouth and post it soon! Hopefully one of these days we will get a digital camera which will make this faster! Anyway, it's so good to be able to celebrate these little "normal" things in his life! He is really developing a great sense of humor and has us cracking up most of the time. He is looking forward to meeting his Aunty Adrienne for the first time and seeing his Grandma and Grandpa Palmer and his Uncle Steven again when we go down to San Diego. It will be a road trip from Seattle so we hope to stock up on the activity books here soon! On a sad note, one of his friends, Mikayla, is near the end of her short little life. Matthew is pretty sad about it. He has lost too many friends to this awful disease so we don't really know what his level of understanding is. But he knows she is in lots of pain and always remembers to pray for her every night. Click here to see a photo of her. Please pray for her comfort and pray for strength for her family. We will keep you posted on Matthew's scans next week! Thanks for stopping by! 1-6-2000 Happy New Year!!! Matthew went in for his weight check on the 6th and much to our relief he went up 0.3kg (or 0.66 pounds)! So now we go in on January 18th for the CT scan of his ear to see what is going on in there. December 1999 Matthew went in for his 18 month post-treatment checkup on December 7, 1999. The good news is that his scans show no evidence of recurrence and his blood counts were awesome! The concerning news is that he has lost a significant amount of weight and has not grown at all in height in the past three months despite eating like a horse! This is worrisome because unexplained weight loss can be a sign of cancer...as a matter of fact it was the first symptom for Matthew before both of his diagnoses. His oncologist wants him back in clinic for a weight check in one month and if his weight is the same or less, we need to see him as soon as possible to find out what is going on. So while we haven't been told he has relapsed, you could say we are a little bit edgy about it right now. Matthew also saw the ENT doc because his hearing loss was continuing to decline. The doc discovered that one of his ear drums looks completely sunken in but it's not related to an infection. Matthew had a slight runny nose that day so there wasn't much the doc could do test-wise to see what is happening, but he wants to see him again in one month to have a CT scan done of his ear. The concern is that there is tissue building up in the inner ear canal causing a vacuum and putting pressue on the delicate bones of the inner ear which could cause deafness. So we were hoping to be able to give a shining clear health report for Christmas, but we were pretty close. We are just in a wait-and-see mode right now and will hopefully know more about the weight loss and his ear in January. In the meantime, the we are getting geared up for Christmas, thanks to the Sharnbroich, Mann, and Halvorson/McGuire families, and we just feel blessed to be home, healthy, and NOT fighting cancer this again this year as we celebrate the birth of Our Lord!! September 1999 "I went to Children's Hospital on September 21, 1999 for my CT scans. I have to get an IV in my arm and I have to drink lots of pop (contrast) and stay very still when I go into the big donut hole. I have to do this every three months and it's pretty boring but I get lots of stickers...but not rocket stickers, they are all out of those! Doctor Carpenter says I am growing up big and strong and my scans were clear! He was amazed at my blood counts too!" Matthew has now been off treatment for 15 months without relapse...Praise God! We are feeling more and more hopeful that Matthew WILL grow up and that he WILL be able to experience all the "normal" things that kids experience. Maybe someday he will graduate from high school, get married, have children...these are all things that many people take for granted, but we haven't even allowed ourselves the luxury of thinking that these things could be possible for our middle child....but now we have hope! "I broke my arm and it hurt alot!! I had to wear a big bandage around my arm and chest but I didn't have to have a cast...hooray! The doctor says that I am growing so fast that it is already healed up!" A few weeks after his scans Matthew jumped off the top of a slide and broke his arm. It was the first time that we ever waited in the Emergency Room! When he was on chemo and we had to go to the ER we would just walk right back into the triage room, but this time we were there for a "normal" kid thing! Matthew asked me on the way there is the ER waiting room had toys. That's when it hit me that I had no idea! Well, they don't and it was a long and boring 3-1/2 hours, but we did know about half the doctors and nurses there! Their eyes would light up when they saw Matthew and Adam (Andrew was at school) and say "It's the Randall's!!", then their faces would suddenly drop and they'd say, "What are you DOING here??" "My Birthday is coming up and I will be 5 years old! I want to have all my friends come to my party and get lots of presents and toys! I wrote a list of what I want too!" Matthew's birthday is always extra special. Not just because he has survived cancer twice, but it also marks the anniversary of his first diagnosis. He was diagnosed on November 14, 1995 and two days later, on his first birthday, is when he had a grapefruit-sized tumor and his kidney removed. |
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| Matthew was treated on Wilm's relapse protocol CCG-4921 |
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