Day 33

Good Monday morning to everybody. This is an update from Grandma on day 33. William and I both had a restfull night. William just returned from Ultrasound and the purpose was to make sure all blockages in the bladder are gone. Remember the big mass he had for a couple of weeks? Well we need to wait for the official DRs report but it appears as if the mass is back. Dang! Double Dang! I think this morning was the lowest point since 2nd round of chemo - itching, crying, throwing up, pain in the head, bones, bladder, hips, just everywhere. William and I will use the next couple of hours to do homework. Jose our official homeschool teacher just stopped by and he is happy with our progress. Yes, I said 'our progress' - Jose pointed out that the caregiver is the one that sometimes need the motivation to start with the homework...huh? Now why would he mention that to me? :-) ) Will update you later today again. Gma

Day 32 Part 2

Dr stopped by earlier and after talking about the daily challenges we had a nice discussion about William on a higher level. The best news in a very long time is : the tumors shrank with 20% overall. I dont have much more to say than Thank you God, and thank you to the Drs who advised Dr Lee to use this protocol, and thank you friends and family for your prayers. I have new courage to support the Klopper-Stowe family. Randell - was this a good birthday present or what? GMa.

Day 32

Update by Grandma. Writing in this journal has become a small part of my own therapy in dealing with everything that is happening with William. I arrived in Sacramento exactly four weeks ago and was in complete shock. Lois and I both tackled this like a project ( it is okay to smile when reading that). 1)I was determined to know everything about this cancer and making sure that William gets the best treatment available in the USA - and I am confident that William is getting the best protocol. 2) Next thing was to get all friends and family to pray for William and I was amazed at the love, prayers and support overflowing from all around globe. 3)We have a routine - that is sometimes put on hold based on William's level of pain or discomfort - we do homeschooling, go for walks, do physical therapy, eat (not a lot), take medication and mouth rinses, pray, play games and watch TV. 4)Lois and I take turns in caring for William and take some time off from the hospital every second day. If we look at the other aspects of the project... then we are truly in trouble - budget, scope, time..... We are not in control. This is not a project. This is life happening to us and I have nothing but God's grace to hang on to. Trying to make sense out of this is a humbling exercise. One thing I am sure of is that William will be completely healed. The road we have to travel to get there is taken one day and one step at a time. In the process we are learning things about ourselves. The good the bad and the ugly from my inner self stares me in the face when William is crying non stop, when woken 11 times at night, when Will is having diarrhea and the tubes and linen have to be changed at 2 in the morning, when my energy level is low and I have to act fast and think smart, when I need a hug but my husband is on the other side of the USA. I sometimes talk to God in angry tones and sometimes I just cry for God to ease William's misery. No we are definitelyy not in control here - but we always have God to rely on. He is in control. Thank you again for all your support. Keep praying and writing. God bless y'all.

Day 31

William and I had a peaceful night infact, we slept until 9am this morning. We both woke up in good spirits and William seems to be feeling better too. Our night nurse did have to take several blood cultures as William's fevers did spike up to 101.9 at 5am this morning. After everything we went though during the first round of chemo I feel pretty prepared for what we are now facing, BUT feeling a little more prepared does not neccesarily make me feel any better. Tomorrow is Randell's birthday and so today William and my mom will be making decorations for his hospital room as too surprise daddy when he comes in tomorrow :). Randell placed an add in our local little free newspaper "The Gold Panner" asking for people to pray for William. Pg 22. Have a good weekend. Keep on Keepin On. Livestrong.

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)