Day 30

I am glad to report that the night was uneventful and both Will and I (Grandma) slept well. He woke up with a headache and a fever but a shot of Tylenol was all he needed. The good news is the promise that the catheter is coming out on Monday. Yipeeeeh!. We are still uncertain about the results from the ultrasound. The nurse's response was : unchanged. We will have to wait till doctor comes around this morning. Have a wonderful weekend everybody. TGIF

Day 29

Today's post is a little different. I am asking that everyone please pray for our friend Erik Lemus. Erik and his dad Erik have been at the hospital since March 8th and by the time we arrived on March 31st they were our "mentors" providing us with information and words of encouragement. Erik's dad (Also Erik) and I often talk and give each other updates on our kids. When William was getting his broviak, Erik was kind enough let us look at his and even feel it. Erik is 13 and he was diagnosed with Leukemia. The chemo treatment that Erik has been getting is extremely aggressive and now he is in need of a bone marrow transplant. I am asking everyone that I know to please get tested! Erik's dad can be located on FaceBook http://www.facebook.com/#!/profile.php?id=100000478540263. More information on bone marrow donations can be found at http://www.marrow.org/. Some quick news on William. Round 2 of chemo will end tonight at midnight. So far he is doing okay, he is just extremely agitated and emotional. The good news is that hopefully the catheter will come out in the next couple of days! WooHoo Thank you for all the love and prayers! Keep on Keeping On. LiveStrong

Day 28

William has now been on round 2 of his chemo for 12 hours. Some of the discomfort has already set in and I (Grandma) have to massage legs, feet and rub his back. We know what we are facing this time and it does not necessarily make it easier. I am taking it one hour at a time and try not to imagine what tomorrow will be like : God's grace to see me through this hour is enough. William started home schooling yesterday. The teacher brought math quizzes and reading assignments enough for a few days but William had enough energy yesterday to finish all the math. We will tackle the reading today. Have a great Wednesday y'all.

Day 26

A lot of fun things have happened in the last 24 hours! Yesterday afternoon Hazel (our favorite dog) came by for a nap and visit with William. William also had a friend, Aidin, from cub scouts come by for a visit and William had an opportunity to make a bear (through Build-a-bear) His bear is actually a frog and we named it Frenchie! This morning, William took a walk with Grandma and his Physical Therapist. They walked the perimeter of the hospital and then across the parking lot to the Sharing House where I spent the night last night. In Addition the walk this morning, William and I have walked downstairs to the gift shop, two round trips to the play room and once to the vending machine. Our estimated combined total for today is 1 mile!!! WOOOOHOOO. William's appetite is also picking up again. So far today he has had 1/2 a jamba juice, 4 grapes, 4 bites of my stew, 1/4 of a twix bar. Our goal is to have him eat at least 500 calories in a day. Round 2 of chemo will be started on Wednesday. Tomorrow William will start a 48 hour continous flow of Menza (protects the bladder from chemo). Although the mass in the bladder is not gone, the Drs are confident that it will dissolve by itself and therefore does not pose any threat, just the discomfort of the constant catheter blocking. Yes, there is a chance that round 2 of chemo could damage his bladder a little more, but the risk of not starting chemo soon is that the tumors grow more and spread further. From what the Drs told us this morning, if all goes well with this round of chemo then we can anticipate William going home around 11th. So basically our chemo calendar is as follows: Day 1 - April 28th - Chemo Starts Day 2 - April 29th - Chemo 2nd Day Day 3 - April 30th - Neuprogin Shot Day 4 - May 1st - Neuprogin Shot Day 5 - May 2nd - Possible Neutropenic Timeframe (Randell’s Birthday) Day 6 - May 3rd - Possible Neutropenic Timeframe Day 7- May 4th - Possible Neutropenic Timeframe Day 8 - May 5th - Tumor Scans Day 9 - May 6th - Neutropenic Day 10 - May 7th - Neutropenic Day 11 - May 8th - WBC Should Rise Day 12 - May 9th - WBC Should rise (Mothersday) Day 13 - May 10th- WBC Should Rise Day 14 - May 11 - GOING HOME!!!!!!!! Once we go home we will be able to be there for 5-7 day periods before we have to come back to hospital for additional chemo rounds. Right now it is anticipated that we will need 6 rounds of chemo but, this all depends on the how the cancer reacts to the chemo. Thank you for all the love and support! Keep on Keepin On. Livestrong.

Day 25

God is working miracles in William's body everyday! We had a great night! William only woke up once from a blockage in his catheter! So, needless to say we both had a great night! This morning daddy brought us McDonalds Breakfast (Yummy). William was practically drooling over his McGriddle, unfortunately his mouth and throat still hurts so he only managed to take a couple of small bites. After breakfast the three of us took a walk downstairs to feed the squirrels. The squirrells were nowhere to be found this morning so we took a walk around the hospital. By the time we got back to the room William's little legs were starting to hurt so we gave him some medicine and within 15 minutes he was snoring! Some of you have asked if you can come visit! Yes! William loves to get visitors! I just ask that you please visit during the weekends hours between 10am and 3pm and during the week between 5pm and 8pm. William is tentatively scheduled to start chemo again this week so if you would like to visit him please do so within the next 10 days before he goes neutropenic again. All of our love and appreciation! Keep on Keeping on - Livestrong

Day 24

Yesterday grandma and I spent some much needed time together outside of the hospital. The stress and emotions between the two of us tends to sometimes be directed towards each other so we decided that we would have a mother and daughter afternoon outside of the hospital. Randell was at the hospital with William while we were out and from what we heard upon our return, the two of them had an eventful afternoon. Grandma Leonna and Grandpa Ron came by yesterday and spent some time with William. From what I heard William was getting extremely spoiled! I spent the night at home last night with Randell and when we returned to the hospital this morning we had the best surprise ever! William was standing outside at the entrance waiting for us! To make things even better William was in great spirits and wanted to see the fat squirrels that aunt Erin and I have been telling him about, so we walked across the parking lot and spent about 20 minutes feeding the spoiled squirrels! The sunshine and laughs were amazing! I want to give a great special THANK YOU to Eddie Sota and his family! Eddie was William's Cub master (he has now moved on to boy scouts with his son). Eddie has been so gracious and giving! Eddie pulled some strings and called in some favors and got William an autographed jersey and photos from Billy Volek (San Diego Chargers) William also got a 3D Dinosaur Puzzle and a short range DIY Radio. (our biggest and most fun source of entrainment right now) William is having a great day today! He is eating YIPEE (first time in three weeks)!!!!! So far today he’s had 1 Madeline from Starbucks, 1 Dill Pickle (small) 1 bite of daddy’s smoked salmon, 1 Go-Gurt, and a few nibbles from some dried mangoes! His taste buds are completely messed up from Chemo so the only things that taste good are pickled or spicy. Hopefully we can get him to start eating more “healthy” food soon. Another piece of great news, we have moved out of the ICU! William is now back in the Pediatric Oncology section of the hospital in room 663. Ultrasound from yesterday showed that the mass in William’s bladder is not getting smaller. On Monday the Dr. will do a procedure with a little camera to see if he can see the mass and figure out exactly what it is and how to get rid of it. Round 2 of chemo was supposed to start tomorrow but, this has been put on hold until the bladder is free from any obstructions and healthy enough to withstand another heavy dose of P6-Protocol. I want to thank everyone that has graciously donated funds into William’s account, kept us in your prayers, provided us with emotional support, and/or provided us with a shoulder to cry on

Day 23

pdate by Grandma - another fairly good night. William will get another ultrasound today. The size of the blood clot in the bladder is affecting the next steps in treatment. Surgery to remove the blockage is not an option now. 2nd round of chemo is suppose to start Monday but only of this clot has shrunk. Randell is coming to spend the afternoon with William while Lois and I are taking the afternoon off. Some of William's scout buddies and school friends are coming to visit tomorrow - it is something we look forward too. Have a nice weekend everybody. Stand strong.

Day 22

Update by Grandma. Lois left the hospital room after Dr's daily visit. She needs time away from the hospital. We had to negotiate with William the time that his mom is going to be away. Boy he is not a push-over; he is good with negotiating. Overall a very good night for William : lots of sleep and very few blockages. The exercise is definitely helping a lot with improving the way he handles the challenges. Please keep on praying for William and for us and thank you everybody for your support.

Day 21 Part 2

Quick update - the Dr.'s have given William some medication to "spasm" his bladder and hopefully break the "mass" down on it's own.... Randell took some time off work this afternoon and spent some time with us. I really needed to see him today and just this morning I was thinking about calling him and asking him to come down..... It's amazing how he knew that I really needed him here today! I LOVE YOU BABE!Randell and I took William for a walk to the game room (It was WII Night) and we spent some time in there watching the kids play games (William just wanted to watch) Along with the walk to the game room, William and I also took three additional long walks today (a combined 1/4 mile) so hopefully the exercise will help his little body do everything that it needs to do (this includes sleep) Millie and her handler spent some time with us this afternoon. These dogs are amazing! William refused to smile all morning long and as soon as he saw Millie his eyes sparkled and his bright smile was stretched across his face! A huge special thank you to the 2nd grade Sunday School Class and teachers at GVCC! William loves all of the great cards (they are on the wall already) and he is sooo excited about the toys (I am using them as a bargaining chip with our current medications) Thank you for all the love and support! William can't wait to get back to GVCC and give you y'all hugs! To those that have sent us jokes, Thank you! William was giggling this evening when I started reading them! It's so refreshing to hear sounds of joy coming him from him! Good night everyone! Let's hope I have a boring night!

Day 21

Let’s start with some good news! Yesterday William, myself, Millie (golden retriever) and our watchful nurse all walked down the hall (100 + feet) Today, we plan on walking to the play room in the pediatric oncology wing J Also, William is no longer Neutropenic! WOOHOOO! Okay, now on to some medical data. -----Never would I have thought that I would come across so much contradiction... One would think that having a high WBC is a good thing, right? NO! Today William's WBC is up to 26.8 (normal is between 4.5 and 13.5) this means that his body has a large infection somewhere. The team is not really sure where the infection is because all the blood culture tests that they have done during the last week have all come back negative. Another contradiction for the day… Antibiotics are bad! In the last 12 hours William has had intense diarrhea from the antibiotics and therefore my poor little boy spent most of the night waiting for us to change sheets, clean him, and disinfect IV lines and broviak caps. Remember the ultra sound he had on his bladder? Well the results are back and there is a large mass in his bladder. Due to the lack of blood flow in the "mass" they do not believe it is cancer and it is most likely a large blood clot. This stupid mass is the reason the catheter keeps getting blocked and is also the reason for the immense pressure that he has been having. So, today there is a lot of discussion between a lot medical professionals trying to figure out what the heck they are going to do to get rid of it. No one wants to do surgery because his WBC shows that there is already an infection somewhere and the last thing they want to do is make things worse. The other risk is that the catheters could just be making the problem worse but, they cannot remove it because the blood count in the urine is still high and if they removed the catheter the blood clots would be too big for him to pass on his own… Randell is still working and it is so hard on everyone (most of all him) when he cannot be here with us during all the “crappy” times. Because we are a single income family it is necessary for him to continue working. William and I love him so much and we understand that he needs to take care of our other responsibilities………….It’s just a “sucky” situation all around! Thank you for all the love, support and prayers! William really loves the emails and blogs! He get’s a huge kick out of the jokes (please send more) Keep on Keeping on.

Day 20

Last night was one of our worst nights yet. Thanks to the constant blockage in the catheter, we got no sleep at all. We have an ultra sound scheduled for later today to see what exactly is going on in his little bladder. The Dr. said that it may be necessary for them to insert a new catheter (3 way valve) so that they can do a continuous saline flush... UGH. We may stay in ICU for another couple of days just so that we can get the bleeding in his bladder under control and stop the blockage! The good news for the day is that William's WBC is 12.8 and his ANC is 9000 :) William's platelet count is on the rise too but, the hemoglobin is taking a hit due to the bleeding in the bladder. It's a rainy and gloomy day in Sacramento and William and I have both agreed that we are going to close the blinds, turn of the lights and sleep the entire day. Needless to say we are both extremely emotional today and I feel sorry for the first nurse that walks through his door with a foul attitude because I have a valcano of emotions brewing inside!

Day 19

William's numbers are on the rise!!! WOOHOO! A CT Scan from this weekend showed that William was a partial collapsed lung, so it is now more important than ever that he gets up often! Yesterday Randell managed to get him out of bed for about 15 minutes. The two of them stood at the window looking at Sacramento with binoculars :) It's amazing how much William's little body needed to get up because once he was standing all of his vitals improved, he peed almost 200 ml within 30 minutes and his mood improved . So, along with CT scan showing a partial collapsed lung, the Dr. did tell us that from the tumors that he did see on the scan, there were some visible shrinkage!!!!!! WOOOO HOOOOOOOO! The Dr. obviously saw the excitement in my face so he did remind me that he did not look at all the tumors so there is no telling if there are new ones or if the others have grown… MAN, THAT GUY SURE KNOWS HOW TOO RUIN A GOOD MOOD! Anyway, I am being positive and our” glass is half full”! The fact that some of the tumors have already reduced in size is FANTASTIC! I have faith that all the tumors are shrinking and that no new ones have been or will be formed. This morning I spoke to the Dr. about the constant blockage in the catheter. It looks like we will be postponing chemo for an additional week so that we can do two things: 1)Remove the stupid catheter and insert a bladder cap - pipe that goes into the bladder from the belly. 2)Allow his bladder some time to heal before the next round so that we do not cause any more damage. With William’s WBC and ANC on the rise it looks like we will be allowing friends and family to visit again as soon as tomorrow. . REMEMBER! If you have kids that would like to visit, please prepare them first. Also, we will only allow two people in the room at a time so it is important that you please talk to other mutual friends and family members as to not overwhelm William with too many visitors at one time. Incase I have not told you this lately…. I LOVE YOU ALL…. Thank you for the prayers! Keep on Keeping On. Livestrong.

Day 18

Good morning everyone! WE HAD A GREAT NIGHT! William slept for more than 6 hours! His heart rate was at one point down to 112 and his RESP was down to 18. His blood pressure is 107/61 (77) and the best news of all is that his WBC is up to .8 and his ANC is 240. Yes, he is still neutropenic, but at least his body is fighting to get his WBC count back up. William received yet another transfustion this morning as his platelett count is still not where it needs to be. I am waiting to get the official results from yesterdays MRI, once I hear from the Dr.'s I will let you know. All of our love. Keep on Keeping on

Day 17 Part 2

Part 2. William seems to be having a better day today. His heart rate has been down to the 120 range and his blood pressure was around 112/60 (78). His fever is still on a Yo-Yo ride but, all the blood cultures have come back negative, and because we are now going on our 5th day with this fever, the Dr.'s have placed him on a third antibiotic... William's fluid yesterday was negative 10.... not exactly what we were hoping for but, I am still happy with any negative numbers. William received a transfusion earlier today so because of that I believe he will positive on his fluid numbers today.... but that’s okay, tomorrow will be a new day and we can try to get rid of some of it then. Randell bought William a remote controlled helicopter and this morning William and I were giggling while daddy was trying to figure out the controls..... It was so good hearing Williams little giggle and seeing him smile. It's amazing how daddy's always know exactly what to do at the right moments :) Grandma has the night off tonight; hopefully she can relax and reward herself with a well deserved glass of wine. I had the night off last night and spent the night at home with Randell. It was extremely weird and a teary eyed setting the dinner table for two instead of three. I know that William will be home soon enough (min of 3 more weeks in the hospital) but, in the meantime the house is just awfully quiet and boring without him running up and down the stairs, yelling at the dogs for eating his toys, getting mad at the cat for getting hair on his bed and arguing with me or daddy about something small and trivial… Thank you for all the continued prayers and love. Keep on Keeping on.

Day 17

Update by Grandma Sally. Last night was just more of the same : a couple of fever spikes, a couple of catheter blockages more coughing and the very very sore throat. The sores in his mouth is bleeding so I am convinced he is in a lot of pain. When I asked about the coughing the answer was the right lung could have more discomfort because of the tumor. We were told that the tumors could even grow a little more after the first round of chemo, and things could get worse before they get better. I sure have to ask doctor when he is doing his rounds this morning what the strategy is to prevent the lungs from being more distressed. Most of William's hair has fallen out but he refuses to shave what is left which means a lot of hair everywhere and a lot of cleaning up. I had housekeeping coming in around eleven last night to clean the room again - the little guy has a lot of hair. And then he discovered the device that his dad brought yesterday to pick up the loose hair on his pillow - you know the one that has the sticky tape around it to pick up hair and lint?. He started rolling this over his head like a brush and the next thing he had big bald spots everywhere. He looked at himself in the mirror and said "Oh gosh I look like a dork!" and then decided to go on a mission. It brought a few giggles in the room - he now looks like your typical man going bald. Just a ring of hair around the lower part of the head. Lois and Randell went home last night and William and I Skyped them. William's face just lit up when Heaven and Halo (the two dogs) also appeared in the picture on the screen. Mom and Dad is also looking for a strip of foam that will fit on the pull-out chair that we are sleeping on in the hospital room. Why on earth would a hospital choose such uncomfortable chair/beds? Surely they see the results in the grumpy mothers and grandmothers in the mornings? When I asked my girlfriend Sylvia who is a twice breast cancer survivor how she got through it all her response was - just go with the program. Meaning the routine in itself gives one structure and momentum to get through the day. I have no doubt that William is going to come out perfectly healed and healthy - I am just not prepared everyday for the rivers and mountains and fires. And staying happy, friendly and loving amidst it all is very hard work. I have to call his mom and tell her to bring a beanie for William. The skin on his head is tender to the touch. Have a great weekend y'all.

Day 16

As my mother mentioned earlier, William's catheter has been getting clogged with sediment and blood clots. Last night the nurse had to flush his lines each time (every 30 minutes) he needed to pee. So tonight, Just as we started settling in for what I hoped would be peaceful and boring night, he got blocked again. The nurses have tried several techniques to flush and "vacuum" out his lines but, nothings seems to work. So, long story short William's entire catheter needs to be replaced. The concerns with this are: 1)Infection 2)His penis/bladder being too swollen to get a new catheter in They are going to try to insert a larger diameter of line this time as to prevent any more blockage.... Good grief! They will be giving William the "Michael Jackson Drug" Propofol and some numbing cream on his penis so hopefully this entire experience will be a little less excruciating. Keep on Keeping on... All I can do is pray and hold on to my strong believe that William will be okay. (I just hope they don't break my son penis in the process)

Day 15

entry by Grandma Sally. What a night! it took me a few hours and three cups of coffee to get a bit of energy together to write this. And Lois made me. Since when do the daughter tell the mother what to do? - there should be some law against this. William's catheter tube kept on blocking up with blood clots and a protien like sediment. He got a diuretic and has to pee often but it would not come out and then he would make noises like a woman giving birth, jump of the bed and sit on the potty, ring the bell for the nurse and then unplug the monitor lines. I eventually stopped jumping out of bed and just watch him go through the routine. Then the nurses would flush the catheter and William gets relieve. It.happened on average twice every hour and he handled it like a trooper. I am so proud of my Grandson. William will get an ultrasonic scan today. Dr sees symptons that points to a possible clot in the liver or kidneys. Will keep you updated. Day 15 Part 2. Good morning everyone! "This is the day that the Lord had made and I will rejoice in it". William is off the BIPAP machine (forces air into his lungs) and for about 2 hours this morning he was without any breathing machines and maintained his own oxygen level between 92% and 96%. His heart beat is still a little high at 157 but his RESP is down to the high 20's mid 30's. The other good news is that William walked again today! Our PT team is amazing and their encouragement is just heartwarming. William’s blood work from this morning showed that his WBC have gone from 0.0 to 0.1, THE Dr’s say that this change is so small that they still consider his WBC to be zero… BUT I DON’T CARE WHAT THEY SAY, Any move in the right direction is a positive move and I am grateful for it. Overall his ANC is zero, but the good news about being at Zero is that it can only get better.. Right? Right! For the last two days William has been averaging around 600 NEGATIVE each day in his fluid! This is fantastic and FINALLY his scrotum is getting smaller and although it is still extremely large, the immense relieve of pressure is obvious! William's belly is still 72 cm but, I know that this will get smaller too! William’s fever is still on a Yo-Yo ride so a blood culture has been sent down to the lab to determine the source. My “mommy instinct” is telling me that he has strep throat. I know this because believe it or not, during the last 7 year I have become real familiar with my son’s body language, and the fact that he cannot open his mouth more than about 1 inch, gargle, or swallow are the signs that he has strep throat. He is currently getting two types of broad spectrum antibiotics so the Dr.’s have told me that the chances of him having strep throat are pretty much non-existent, never less… I am demanding that they test him. If there is one thing that I have learned through this whole ordeal it is that I will never again doubt my “mommy instinct.” I am trying to send individual thank-you e-mails to everyone that has written on our blog, so please remember to leave your e-mail address. Please be patient with me, if it takes me a long time to respond to you, it’s NOT because your message was not received or that it was not appreciated… I just have a lot of people (what a blessing) to respond too. Please keep the prayers coming. Keep on Keeping on. LiveStrong and God Bless everyone one of you! PS. William says “Hi” (Yes, he is a man of many words ;) )

Day 14

It's hard to believe that two weeks have passed since we were first admitted into the hospital. Two weeks ago our day started with an appointment with a new pediatrician to discuss some of the concerns that I had. One hour later William was at Marshall Hospital getting ultra sounds and by 2pm that afternoon we were being admitted into Sutter Hospital. 14 Days since we learned he has cancer, 11 days since we found out it was DSRCT. It’s so easy to lose track of time. My days are starting to blend together and I often have to look at my cell phone to figure out the date and day of the week. I have made a promise to myself and William that I will not allow my child to become a "zombie" and do nothing else but watch TV all day long while in ICU. The lack of mental challenges and interaction is not a good a thing so I am making a point of actually using some of the great puzzles and games that we have received! I am also trying to get us back into a "normal" routine (similar to what we had a home) TV off by 6pm dinner between 6-7pm, bath time between 7-8pm, family time/TV time between 8-8:30pm lights off no later than 8:30pm. Our lack of routine is taking its toll on all of us and it is most apparent on William’s sleep patterns. He tends to take several naps during the day and then at night, he does not sleep for any periods longer than an hour. I am sure his body, mind and spirit will all benefit from a good normal routine and a great night’s sleep. I just got done with my morning meeting with Dr. Falco (ICU Dr.) William’s fluid output for yesterday was negative 600! WOW, So far he is negative 200 for today! This is great news and hopefully his little body will continue to get rid of the excess fluid. Surgery is no longer something that we will be considering. William’s ANC and WBC is still at zero, we were told that they should start to slowing climb back up in the next week. Round 2 of Chemo will start around 4/24 and he will have some more scans, MRI, EKG, etc. on 5/2. Keep on Keeping on.

Day 13

William's fluid are negative 100 from yesterday, he is still retaining a lot more from the previous week so the relieve is still not enough to eliminate any pressure. The nurse is going to talk to the Dr. to find out what our next plan of attack will be. Last night William's heart rate shot up to 172, his blood oxygen was 91 and his RESP rate was all of the chart. The doctors have placed William on a special "machine" that forces oxygen into his lungs and forces them to expand. Due to constipation and then sudden diarrhea William has hemorrhoids (his current biggest frustration) we cannot get him any sort of medication for it because it apparently does not "play well" with chemo. Poor Kiddo. He is so frustrated right now and I feel really helpless William's fever is currently at 102.5 f (37.1 c) The Doctors have changed his antibiotics and they have also given him several doses of Tylenol. I just got done processing some news that we received this morning from our ICU Dr. If William does not get rid of at least 500 cc of fluid by himself today then we will have no option but to place him in medical coma and insert tubes through his ribs into his lungs(both sides). The pressure from the fluid buildup is creating chaos in my little boy’s body and they need to get the fluid out ASAP. The risks we face with this procedure is as follows: -Surgery -Sedation -Infection -Lungs Collapsing -Infection Please pray! Take a few moments right now and call out to God that he heals my little boy. Pray that William's little body excretes all the fluid so that we can avoid such a risky surgery. Day 13, Part 3. Fever is gone! William is peeing! I did a PEE DANCE in the room with him a few minutes ago because his little bladder is working overtime!!!!!!!He is NEGATIVE on his fluid intake. I am waiting on the exact final number but it looks like we have avoided surgery!!!!!!! Thank you for all the prayers! Thank you for all the love! Thank you for all the beautiful e-mails and blog messages! We read them all to William. All of your devotion love and faith keeps him enthusiastic and upbeat! He will beat this stupid cancer! In the meantime your love and support is a huge part of our daily routine! Thank you!.. KEEP ON KEEPIN ON- LiveStrong!

Day 12

Day 12 . It's important to keep the positives in sight and to concentrate on the daily blessings... so I am starting today's blog entry with the positives! WILLIAM WALKED TODAY! Yep, that's right. Sir. William took about 15 steps today! He is also getting up on a regular basis and is now able to stand for about 30-40 seconds while we change sheets, give hugs and/or sponge baths. Another obstacle that we have overcome, he is now able to drink about 5ml of PediaSure. His throat is still extremely tender but, at least he is drinking something. The last thing we want is for his intestines to get atrophy. Okay, now on to some of the medical facts, William's white blood cells are down to 100 and his total ANC is 0. (http://en.wikipedia.org/wiki/Absolute_neutrophil_count) We have moved William into a more secluded and sterile room in the PICU. His little body is still positive about 2 liters of fluid so the Dr. has placed him on a steady IV drip of diuretic. Some of you have asked why the Dr.'s don't just drain the excess fluid called Ascites (http://en.wikipedia.org/wiki/Ascites) well it is because his body will go into shock. So basically right now the medical team is trying to find a combination of drugs that will "play well" with the chemo treatment and help eliminate the excess fluid buildup. We do not want the fluids to get any worse because they are already pushing on his lungs and heart and anymore pressure would create havoc. What is causing the fluid? Well, basically his lymph nodes are not working the way they should and his lipid (http://en.wikipedia.org/wiki/Lipid) count is low too so. William's tummy is now 72 cm and his poor scrotum....well, let's just say that my little man is not comfortable. William's Cub Master (Brian) from Cub Scouts came by today to drop off some items for us. Let me just say that Pack 190 is awesome and I am overwhelmed with the gifts and donations that we received. JC (Brian's wife) made an amazing poster/collage/get well soon card! The love and effort that went into this made us all cry! Thank you JC! I also want to thank everyone that donated towards the funds that we received. I want to give a special thank you to the Webelos boys in Den 2. Thank you so much guys for making the awesome poster! William has it hanging right next to his bed! Thank you for all the love and support! Please keep the prayers coming!

Day 11

Day 11 Part 1. William's white blood cells are at 200 (normal would be between (1500 and 2000) which means that he is now extremely Neutropenic and prone to infections. His platelets have also dropped and is currently at 42. His Hemoglobin is also low. The medical team have placed him on more platelets and a blood transfusion. I want to take a moment and give a huge special thank you to Don and June for the fantastic sword that Don made William. On one side of the blade there is an engraving of "Sir William Nicholas Klopper Stowe" the other side has a Bible verse from Ephesians 6:10-18. William's eyes and smile were so big when he saw it this morning. Don - Thank you so much for all your love and support and the amazing gift that you made our little man. Also, I want to thank the entire PTA team and the staff at Charles Brown Elementary School. Your love, support, gifts, photos, videos, blankets, prayers, food, snacks, and motivation is a huge support for William and the rest of us. William's mood raises everytime we read him a card and show him the posters. Ms. Fogg, thank you so much for everything you have done. William loves seeing the smiling faces of his classmates. Randell and I went to church last night. There are times that I feel so disconnected from God and angry at the world then, at other times I know that He is in control and that nothing happens without a good reason. I just need to trust and believe that it will be okay. It is so hard to see or even understand the reason why my son has this stupid cancer but, I believe in my heart that he will be okay! He will one day go to his senior prom, he will graduate high school, he will have his first kiss, he will get married and give Randell and I grandchildren. He will be N.E.D! Please keep the prayers and blessings coming! We love you all and appreciate everything that you have done for us. Loiss and Randell

Day 10

Day 10 - Update from Grandma Sally. Grandpa Jacques, mom Loiss and I are hanging out with William today. Jacques and I took a break last night and after a good night's rest we came in a little late this morning. Loiss is taking a break tonight. William's discomfort is increasing - the pain in the bones has him shouting at us at times to rub, and rub, and rub. In between the action we read from the Diary of a Wimpy Kid - Dog Days - and have a good few laughs. Jacques is returning home to NC tomorrow - someone has to pay the bills. We will miss him. I had some people asking about the tumors. There are quite a few. The ones worthy mentioning in the order of concern - biggest one is between the lungs and around the aorta, big one on/around the liver, big one on the spleen and big one around the bladder. A few spots on the lungs and a few smaller ones in the tummy. Some of the tumors are lymph nodes. Like the ones in the lower part around the bladder. We have not measured them again since the initial scans. We know that William will require a few rounds of chemo. It is a cycle of chemo to kill the nasty fast growing cancer cells, which also effects the white blood cell count, then some treatment to build up the white blood cell count just to follow with another round of chemo. When the tumors are small enough to not pose a danger anymore (70% smaller) surgery will follow to remove the rest and if needed stem cell transplant. For surgery and transplant William will transfer to either Stanford or San Francisco. We might lean on you for assistance with accommodation close to these facilities. I will keep you updated.

Day 9

Day 9 Part 1. I am happy to report that we had a boring night! William's vitals are holding steady and his breathing has evened out a little more. William has managed to discrete almost 2 liters of fluid in the last 14 hours. The diuretic is obviously working and hopefully William's belly and scrotum will shrink in size soon. William's stomach was measured at 69 cm last night. Grandpa arrived yesterday! YIPEE! William was so happy to see him. Grandpa's assignment is to get William out of a bed a little more and hopefully boost his mood a little more too. Randell (Daddy) was here again last night. It feels so good to have the three of us together under one roof. There is a bond between us that I can not describe. This weekend we will be spending more time together and my goal is to go to church with Randell this weekend. I have not been since this whole ordeal unfolded. Dads need to make things better and fix what's wrong. Unfortunately Randell cannot fix this and it is so hard on him. I have asked him to get the house ready for William, hopefully this keeps him busy and his mind occupied :) William will be at the hospital for at least 3 more weeks but, when he does come home his room needs to be downstairs (hardwood floors instead of carpet). We will also need to super sanitize and clean everything. The dogs need a fenced area built for them so that they can stop spending so much time inside. We need to get an air purifier and replace all our HVAC filters. Please keep Randell in your prayers too. Day 9 Part 2. Another fantastic day! William got out of bed three times today! We did not do any actual walking, but William did spend several minutes standing and sitting straight up. His scrotum is still extremely swollen so sitting on a toilet (not that he did anything) was the most comfortable thing he has experienced all week. :) Due to the blood in his urine, his platelet count (50) is down so he is now receiving some via IV. He is also receiving lipids and an increased TPN (Nutrition through IV). To treat the current sores in Williams mouth and prevent any more of them William is gargling with BMX and Nystatin every six hours. Randell spent the morning and afternoon with us. It was great! William loves his daddy so much and misses him when he's not around. Randell hates leaving us and having to go home but, at the same time we know and realize that its a necessary evil and our other responsibilities need to be taken care of. A lot of you have volunteered your time and resources in helping Randell out with getting the house ready for William. We really appreciate this and WE WILL be contacting you to take you up on all your wonderful offers. Right now Randell and I are just trying to figure out our game plan and schedules. Jaco (my south african brother from another mother ;) ) and his wife Stephanie spent some time with us this afternoon and brought William some airplanes to hang in his room. YEAH! All the prayers are working! Everyday there is a new blessing and miracle that we are so grateful for. We ask that everyone please continue to pray for healing! I read about another DSRCT patient today that is also NED (no evidence of disease) so there is a ton of hope out there for us! We love everyone so much and we appreciate every prayer, casserole, e-mail, guestbook entry, hug, coffee, and positive thoughts. A special thank you to Jeanette and her husband Johan. Jeannette recently went through chemo and has been a fantastic source of information and recommendations for us! I also want to thank them for the puzzles and games that were sent to William. Keeping his mind occupied with something else besides pain and TV is a challenge

Day 8

Day 8 - 1st update by Grandma Sally - William slept very well last night after being in pain late evening. The staff changed his IV and monitor set-up and William can now control his pain by pressing a handy little button that controls the pain medication. From 11 to 4pm I woke up three times just to notice that he was still asleep and the wonderful nurse has moved his lying position from one side to the other by inserting a pillow between his side/back and the mattress. William is terribly swollen in his tummy and scrotum and lying on his back with legs bent seems to be the most comfortable position. When asking him this morning whether he had a good night's rest he responded "No, Grandma. You kept me awake with your snoring" HHmpf! I apologised and reminded him that his mom will stay with him tonight so he can at least get some rest. Just a reminder again that Will's 1st round of chemo is over. He now gets IV feeding. He also got his first shot that will support building up new white blood cells. We know to expect pain in his bones from this shot around the 3rd day. I am still waiting for the x-ray Dept to send me the CD - I have breathed in the neck of a few people this morning to make sure we get it asap. Loiss took a break last night and spent time with some of her girlfriends and theirbetter-halfs. Thank you Girls - your love, support, food and attempt at making koeksisters are highly appreciated. She came back last night a lot more relaxed. Grandpa Jacques is arriving today and we will assign to him the responsibility of regular exercise for William - even if it is just throwing a ball and playing catch. Will got up yesterday when Hazel (the other therapy dog) was here - but he was crying and we sat him back on the bed after just 2 minutes. After that his body functioned a lot more effective and vital signs improved quite a bit. We know the exercise is good for the body and spirit we will just do it different so he is not in pain. We will update you again after DR has done his rounds. Day 8 - Part 2 by Loiss. William has blood in his urine today. The Dr. explained that it was due to the Chemo. I am extremely pissed off because they were supposed to be giving him a steady dose of Mezna (drug responsible for protecting his bladder from chemo) but apparently only decided to give it to him for two days..They are putting him back on the drug today but I was told that the bladder could be expected to bleed for weeks. My mom finally received the CD-Rom of information from our Dr. this morning and she is currently at the FedEx office trying to send the package to the Dr. in NY. I received a e-mail this morning from a mom who's daughter HAD the same cancer. Her daugher is now NED (no evidedence of disease) Its such a huge comfort knowing that I am not alone and that there is a community out there on yahoo for the parents and patients of DSRCT. She also refered me to the Dr. that treated her daughter and had a huge success rate with a protocal called VACIME. Our PICU Dr. just stopped by and told me that they are starting William on a dieretic today. Hopefully this will assist him with getting rid of all the fluid build up in his tummy and scrotum. They are also giving him some more Albumin(a certain protein cell that his body is lacking and desperately needs) http://en.wikipedia.org/wiki/Albumin Day 8 Part 3. Today was one of the best day's yet! This morning William sat straight up in his bed and said " I want to get up" At that moment his physical therapist walked in and within a few minutes William scooted himself off the bed, stood up gave me a hug and then sat on my lap for about 5 minutes. Hallelujah! My heart is filled with new found hope! William's spunk and feisty attitude is back and in full force. He had several arguments with grandma today and on a couple of occasions even put her back in her place ;) Grandma needs to remember that William is a big boy and he is fully capable on doing certain things by himself :) Pastor Tim and Ginger from our church family GVCC were here this afternoon and spent some time folding paper airplanes. Pastor Tim prayed with my mom and William. Thank you to our entire GVCC family for your continued support and prayers! God is listening and the proof is in the daily miracles that we see in William. Grandma and William spent some time playing card games this afternoon. Snap has become a family favorite and William's determination to beat grandma at every game was apparent ;) The best news of the day is that I managed to find something that my child could eat (or chew) for the first time in 4 days. Bubblicious gum! His jaws are hurting so naturally he was not able to get too many chews in but, his willingness to place anything in his mouth is a positive move towards NED. I am still on the hunt for nutritional items that he is actually willing to eat....but in the meantime I am grateful for the small steps we are taking. William also took several large sips of water today (First time in 4 days) I am so proud of my son! I cannot express the gratitude in my heart for all the love and support that we are receiving. Please continue the prayers.

Day 7

Day 7 Part 1. I (Lois) spendt the night in ICU with William and it was the most restfull night that we have had since we arrived 7 days ago. The catheter is extremely uncomfortable but because William has it in we were all able to get some actual sleep. The nurses in ICU are FANTASTIC. They are all so eager to keep us up to date and educate us on the information. Because this is such a rare cancer (less than 200 people have ever been diagnosed with it) we are all learning together.  Some of the medical articles that we come across are scary but, then we also come across articles about survivors that were diagnosed at William's age and are now 18 and cancer free. There is a ton of hope out there! My mom found a Dr. in NY that has apparently treated three other DSRT cancer patients. We called him yesterday and left a voice mail message yesterday and hopefully he would be able to consult with our medical team. Thanks for all the prayers and emails.

Day 8

Day 7 - 3rd update by Sally. William's left arm and leg muscles are hurting and we had the therapist out here to assist with exercises and massage. It has been 48 hours since he last moved. Not sure what is causing the pain. Could be any of the medicine - he has received 28 different medications by now, or one of the Tumors are pressing on the nerves somewhere. One of the therapy dogs are also coming to visit this afternoon and we hope to convince William to get up and sit on a chair and either walk with the dog or thrwo a ball and play catch - he has to exercise as the passive lying in bed is not good for the lungs and heart. Can not afford any weaknesses now - he has to stay strong. I did some research and found Dr LaQuaglia from NY. He is the Dr that has treated more DSRCT patients than any other Dr. His patients also have the best survival rate. I contacted him and spoke to his PA. Dr LaQuaglia and William's Dr Lee communicated with each other this morning and are exchanging information about Will's condition. I will get a DVD later today with Will's X-rays and other info and Fedex it to DR LaQ. this afternoon. What an amazing man to take time from his busy schedule to help DR Lee and William. If we have to move William we will - but Dr LaQ will hopefully make it possible for the staff here at Sutter to be knowledgeable and have access to the latest and best information they can get. We want them to be successful not just for Will but also for the next patient that has DSRCT. We need those skills here in Sacramento. Day 7 - 2nd entry done by Sally. William is looking so much better this morning. The first round of chemo is done. His heart rate is avg 145, blood oxygen level is 98%, Resp/minute avg 28 and blood pressure very normal and good. Overall a great set of numbers compared to the last 6 days. His sense of humor is back and he made us laugh with a dry remark this morning but energy level is low - he does not want to play snap with me this morning :-( Every new day is a day that the Lord has made and we will rejoice in this day and say thank you for the wonderful blessings that comes in small but powerful dosages. We got this below email from Beth Higgin's sister-in-law Kasey - I wanted to share our Easter Sunday service with her, since it included William. Obviously William's been on my heart and I've been praying extensively for his miraculous healing. I contacted every prayer warrior I know. I also contacted my Pastor, since he's been an integral part of my healing since my walk through breast cancer. Anyway, I left him a voicemail on Friday night, asking him to pray for William if the Lord laid him upon his heart. During our worship service this morning, Pastor announced that he was going to do something unconventional. He said the Lord laid something on his heart. He started talking about William and his diagnosis. Please understand that this is not common! We have a lot of prayer chains and emails that we receive asking for prayers - it's not common for Pastor to bring them to the congregation each Sunday - let alone Easter Sunday! Anyway, he asked the congregation if we would pray for William, and quickly started speaking out a prayer for William's miraculous healing and for all the cancer to be removed from his body. The entire congregation was shouting out in agreement that the cancer would be gone. Then he asked us to think about William as we sang our next worship song which was "Hosanna in the Highest". He stated that Hosanna means One Who Saves and then proceeded into the song. It was very emotional for the entire congregation which was bloated in size due to the Easter holiday. The Holy Spirit was heavy in that room! Immediately following the song a lady started to speak.(Our congregation allows people to speak as they feel led by the Holy Spirit.) While I don't remember all the details of what she said, I do remember her loudly pronouncing God's Word. She was saying, "I am the Creator of the Universe. Do you think I am not big enough to take care of your issues? There is nothing I cannot do. Remember, there is nothing I cannot do." Of course I was crying, as well a lot of other people. That even included the very young men on the worship team. It was incredible. I just wanted to let Loiss know that many people are praying for her little boy, even people she doesn't know. Many are touched by him and praying for his miracle. I wanted to remind her that Jesus is involved and is touching the hearts of many on her behalf. I'll continue to pray as I'm sure many more are behind me. Send her love, Kasey. Thank you Kasey for sharing this - my faith and love got a boost. Keep on sharing - Sally We will update you again later this morning after talking to Dr Lee.

Day 6

Tuesday, April 6, 2010 8:42 AM, PDT

Day 6. Part 1 (By Loiss) In an attempt to get some much needed sleep, I spent the night downstairs in the SharingHouse (A home funded through donations to provide residence to the family of cancer patients) My mom spent the night with William and from what I heard this morning, the two of them had an eventful night.

William's chemo is starting to show the obvious side effects. Vomiting and constant nausea is now aparent along with stomach cramping and sensitive skin.

William's sense of humor and his strong "take no crap" attitude is still present and there are a few times that he has said things to both grandma and I that not only makes us smile but , also reassures us that this strong will of his will get him through this! He is a fighter!


We (Randell, myself, my mom, my dad, and Randell's parents) have a meeting scheduled with the entire oncology today at 2pm. This will give us all the opportunity to ask some of the unanswered questions and get a better understanding of the entire chemo and possible radiation process.

We are still waiting for the results from yesterday's bone marrow biopsy and brain scan. I believe that the results are going to be good. Please pray for William.


We have received a lot of phone calls from people asking if they can come visit. This is fine. I just ask that you please coordinate with other mutual friends as to not overwhelm us too much with visitors. William is only allowed to have 2 people in his room at any time. So, if you stop by to visit....please be patient and expect to spend some time in the waiting room.


Also due to the aggresive chemo that William is receiving, we are told to expect him to be Neutropenic in approx 7-10 days. This means that his white blood cell count will be down and he will be extremely prone to infections and deseases. Therefor, once he does go Neutropenic, we are going to ask that no one except for immediate family members to come by. I cannot take any chances.

Please keep the prayers coming. I know that miraces happen and I know that God is with us.
 
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Tuesday, April 6, 2010 1:00 PM, PDT

Day 6 part 2. William has been transfered into ICU. More information to come. Please pray. Pray Hard!

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Tuesday, April 6, 2010 9:59 PM, PDT


PRAYERS ARE WORKING.... Preliminary test results show that bone marrow and brain scan are cancer free. This will make the chemo easier and will give his little body more of a fighting chance.

Keep the prayers coming.
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Tuesday, April 6, 2010 5:56 PM, PDT

Day 6 Part 3. William is in ICU. His oxygen went down to 87 and his heart rate went up to 170 so it was decided that it would be best for him if we placed him in ICU were he would get more 1 on 1 attention from the medical staff.


We had a meeting with the Hematologist and Oncologist this afternoon. They gave us decision as to whether or not we proceed with chemo and fight this, or if we want to make him comfortable and allow him to pass away in comfort. Without Chemo William has about two weeks. To us there is no option.. WE ARE FIGHTING. We believe that God is on our side and all his love and healing power will pour down on us. William is such a strong fighter and he has a lot to look forward too. WE ARE NOT GIVING UP. We have an army of prayer groups across the world and we are gearing up for war against this cancer.

William's urine output has not been good and the Dr.'s are afraid that if he does not pee out the chemo that his kidneys will shut down, so, it was decided to insert a catheter in his penis. It was an extremely hard thing to watch. Daddy had to leave the room, it broke his heart to see his little boy go through this.

Our goal right now is for William be comfortable because this will stabilize his heart rate and breathing. Therefore, he has been placed on a steady doze of Nubain.

The chemo is extremely aggressive and therefore we know that we face a long hard road ahead of us. Some of the things we were told to expect include:

High fevers
Infections
Sores in his mouth and throat
Nose Bleeds
Diarrhea
Seizures

We need everyone to keep praying. God is listening!

Thank you to everyone that is praying, calling, emailing, stopping by, and thinking of us. Because William is in ICU we are only allowing immediate family members to visit at this time. We love you all and appreciate everything that you are doing for us!

Starting chemo

William is officially on all three of his chemo medicines. He is also receiving steriods and a something called Mezna that will help his body get rid of the Chemo chemicals.

Last night was the first night since we arrived that Williams blood oxygen was higher than 92. He held steady at 94. His heart rate is also down to 139.

William has a bone marrow biopsy scheduled at noon today and in the meantime the little guy is not allowed to eat anything. The steriods are making him hungry (something he has not been in weeks) unfortunately he is not allowed to eat or drink anything.

We are currently sharing our room with litle boy named Justuce (yes I spelled it correctly) and it sounds like he will be going home today. The news of William's room mate leave is bitter sweet as he has been a great support for William but, at the same time it would be nice to have some privacy again.

The hospital has a great Child Life team that consists of several early childhood development specialists and three service dogs. Thats right, I said dogs. Yes, they are allowed i the C ward. William's favorite dog is Greta, a black Labrador. I will post photos later of William and Greta.

Livestrong!

Keep the prayers coming. We need to ask God that the bone marrow biopsy is clear of C.
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Monday, April 5, 2010 3:59 PM, PDT

Day 5 part 2. Look for the pictures of Greta and William - Greta is a therapy dog and has spent most of the morning with William. He only seems to sleep when she is around. Also - the big bandage on Will's tummy is to abdorb all the liquid seeping out of a tiny whole in his tummy caused by the biopsy needle. The lymph nodes are not working as well as it should and the fluids are building up in his tummy and that together with the big tumors is causing so much pressure that the tiny whole can not heal and close. This is also Will's biggest irritation right now - the constantly wet bed and clothes. Will has started with aggressive chemo treatment last night Cytoxan, Oncovin and Adriamycin. They flush his kidney and bladder every three hours. The treatment will be applied as long as necessary to shrink the tumors. The big concern is the aggressive growth of the tumors and how quickly it spreads. The tumors put pressure on the lungs and heart and his oxygen intake goes down. For those of you who don't know yet Will has a very rare type of cancer called desmoplastic small round cell tumor DSRCT - a very aggressive cancer. Please google it to learn more. We ask for your prayers - especially that God bless the Doctors and staff with wisdom to provide the best treatment they can. There has been 170 known cases treated in the USA since 1989 and only 36 that is currently alive; so not a lot of experience to tap from. (www.dsrct.com)

Will had a spinal tap done this morning from both hips for the docter to check for any cancer cell's in William's spinal fluid. They also did a brain scan to check for any tumors in the brain. We are waiting for results.

He is not having any real pain today he is just very agitated and uncomfortable because of the extreme pressure on his heart and lungs. When he gets upset about something he stops breathing and that starts a round of negotiations to calm him down and get him to breath again. The oxygen is close by and we sometimes have to negotiate with him to use that too. Doctor said this morning that the pressure in his tummy will go down within the next couple of days when the tumors start shrinking.

Lois and I (Sally) are staying in a private room provided by the hospital here in Sacramento at $20 a night - we share this complex with other families and have a well equipped communal kitchen and laundry room. We are truly thankful for the daily blessings we receive. Ginger and a few other ladies from GreenValley Community Church have brought us food and snacks. Thank you Girls!

Love you all and appreciate your prayers and emails of encouragement. Feel free to blog, email or call. My number is 714-600-2509. We will update you again tomorrow

The start of a long journey

Sunday, April 4, 2010 9:13 PM, PDT


Today was the hardest day of my life. Sitting in the Dr's office and listing to him give us the diagnosis was/is extremely surreal... I keep thinking that I am going to wake up tomorrow morning and find that this has all been a bad dream.

http://en.wikipedia.org/wiki/Desmoplastic_small_round_cell_tumor#Symptoms


My mom arrived today and together the two of us will be figuring out the next course of action. Although the Dr is great! We are considering the possibility of moving him to St. Judes or Shriners merely because they specialize in pediatric oncology. I am yet to find a Dr. that has experience with this particular rare C.

Please keep the prayers coming. I know that God is listening and I know that he works miracles! My family has seen soo many blessings and eperienced blessing on many levels, I just keep praying that my prayers are answered too.

William will be starting his Chemo in the next couple of minutes. He will be receiving three kinds:

Cyclophosphamide

Doxorubicin

Vincristine

He will also be receiving doses of Steriod.

Due to the side affect of all three chemo treatments, William will be losing his hair. He has been begging us for months to have a mohawk, and considering that he will be losing his hair, his dad and I have agreed to finally give him one tomorrow :).