Day 44

Happy Friday every one! We are having a great day today and William seems to be in a really good mood. We spent the first part of the morning outside enjoying the morning son and delta breeze. William is so eager and excited to go home that he is walking around giving everyone high-fives and cracking jokes that only 7 year olds understand. Williams bladder and mouth/throat problems have improved so much during the last 48 hours that even the Dr was surprised. Our only challenge and concern at this point is getting him to eat. Thank you for all the love and support Keep on keeping on - livestrong

Day 43

Hi everyone , my apologies for the delay in updating the blog but , with grandma and the laptop both being in North Carolina I have found that its a little hard to update the site via blackberry as my thumbs start cramping after the tenth word :) So, if my spelling sucks for this update please understand that its only because I am too lazy to figure out the spell check feature on my phone. William is recovering very well and each day he is smiling a little more and his personality comes out with his usual quick little witty remarks. Williams next scan is scheduled for Tuesday and once we get the results from that we will be able to go home for a week! Depending on the results from the scan we will have a better understanding about what the next two months will hold for us! Remember , we need the tumors to shrink 70% so that surgery can be done to remove the rest and a hot chemotherapy wash for all his organs. I promise to write more tomorrow , Keep on keeping on - livestrong

Day 41

Update by Grandma on behalf of William, Lois and Randell in CA - Randell stayed with Will last night and Lois could not help having a good chuckle this morning at Randell looking real tired. Even though the night was busy it was actually just more of the same and William is still improving every new day. The two boys together was a good team and at some point this morning the two of them had a good giggle (dare I say like girls...?;-) The Klopper-Stowe family was overwhelmed with emotion when they received the cards (yes there were a few) signed by the Watts team. William is on a mission to count all the signatures - there's got to be a few hundred!!!!. The Klopper-Stowe family wants me to express gratitude and appreciation on their behalf for the cards, financial support and love from the team in Spindale. Bless y'all. William has not used his pain button for about 12 hours - very good news. We are thankful for and appreciate every little small action that indicates his (William's) improvement and fighting fit spirit. Thank y'all for your prayers and support.

Day 40

Update by Grandma - according to the lab report this morning William is no longer neutropenic. Now that his body has the ability to start the healing again there is so much to work on. William has not spoken a word in more than 24 hours - his mouth is filled with large very painful sores. He is now receiving antibiotics through an IV in his arm for his mouth - this antibiotic can not go through the broviac with the other medication due to some conflict. William's bladder situation has also gotten worse - we are not sure whether he now goes less and less because it is so painful, or whether there is an urge but nothing comes out. Anyhow this will receive focused attention during Drs rounds this morning. William is now allowed to visit the playroom again and visiting with the other kids usually cheers him up. We pray for a painless week, and the gift of going home for a few days. Have a great week everybod

Day 39

first of all I want to send out a big happy mothers day wish to all the moms, aunts, grandmas and sisters! Grandma is on her way to grandpa in north Carolina so its is just William and I right now intill daddy gets here a little later William's wbc is finally on the rise and this is great news. This round of chemotherapy was so hard that I am scared about what the next round will be like. My ownly comfort is that I know God will work miracles and that the shrinkage we already have in the tumors will continue until he is completely healed I don't know if we can still anticipate William coming home this week. His counts were so low for so long that I would be amazed if we did not stay here at the hospital until the end of round three of chemotherapy. William is still getting a steady transfusion of platelets and this morning they added a transfusion of blood too. Anyway thank you for all the love and support. Keep on keeping on. Livestrong

Day 38

Update from Grandma - Howdy everybody it is a beautiful Saturday morning here in Sacramento. The lab results showed small improvements on platelets and wbc counts but not close to where it should be. We just have to ride it out. The biggest cause for discomfort and lack of sleep is the pain in the bladder and extreme pain when William has to pee, headache that comes and goes, and sores in the mouth and throat, sensitivity all over the torso and then the pain in the bones - mostly upper legs and hips, and the nasty fever spikes and chills. We remind ourselves that all the areas that have fast growing cells are suffering because the chemo is meant to kill those cells - and remember the mouth, throat and bladder also have fast growing cells. When the wbc and platelet counts go up the body's ability to heal itself increases. DR also explained that recovery after each new round of chemo will take a little longer everytime - bounce back is slower. We are thankful for small steps in the right direction. We are thankful for your loving support and prayers. Have a great weekend. PS I am going home tomorrow for a week and need to take my laptop with me. The blog updates might be less and delayed in the next week

Day 37

William's little body seems to be consuming more platelets than expected so he is now on a standing order to receive on a continues transfusion. We are now also on day 8 of neutropenia (double the time from round 1). We are all extremely excited to go home next week. Sorry about the small blog today but we are all so tired that even just writing these few sentences seem to be exhausting. Keep on Keeping On. LiveStrong

Day 36

Update by Grandma. We had a busy night but only because Will had to get up to pee a LOT! But no more nose bleeds since yesterday. William has received a few blood transfusions and will continue untill his white blood cell and platelet count is up. The goals for today is to get a little excercise, eat some solids, do homework and take all the prescribed medication and keeping it in. The Sacramento River Cats came into the hospital today and William got to visit with them~!!! News 10 was here to catch the action and our Sir William will be on the news tonight between 5-6. In the meantime, here is some of the raw footage captured by the camera man. http://www.news10.net/video/default.aspx#/Recent+Videos/River+Cats+bring+joy+to+young+Sutter+Memorial+patients/52821470001/52747302001/83388973001 Also, there are some photos http://www.news10.net/slideshows/gallery.aspx?slideshowname=River-Cats-visit-sick-kids,-May-6,-2010&provider=emailhttp://www.news10.net/slideshows/gallery.aspx?slideshowname=River-Cats-visit-sick-kids,-May-6,-2010

Day 34 Part 2

Since the last journal update earlier today we have faced a lot of new and unexpected obstacles. William’s nose and mouth is bleeding. No, I don’t just mean some occasional blood, but actual flooding and “scare the crap out of you” amounts of blood. He is now also vomiting blood from what we are assuming is bleeding from the stomached…….. Earlier today the good news was that the stupid catheter came out, well I spoke to soon. Urinating is now an extremely painful feeling for him and my poor little man is in so much pain that he is actually punching walls while trying to pee. Believe me, this SUCKS! He has attempted to pee in every possible sitting and standing position just to relieve some of the excruciating pain….. Nothing seems to work. William is now also on morphine…. We switched him from the pediatric pain killers as they no no longer seem to be working for him. Unfortunately the Morphine does not seem to be working on the pain in the penis Seeing someone you love so much go through so much and feeling absolutely useless and limp with worthlessness is the worst thing! I don’t have words to explain the extreme pain and gut ripping terror that I am experiencing. I hope that you never have to experience this. The obstacles we faced two weeks ago now seem like small little ant hills compared to the giant mountains we are now climbing. I felt so prepared for this round of chemo and now we all have this sickening feeling in our stomachs that maybe we were a little too ignorant going into this second round. ...

Day 34

William and I (mommy) had an extremely rough night last night. Between all of the catheter blockages, itching, headaches, vomiting, and panic attacks, we got very little sleep. The great news is that the catheter came out this morning! William's bladder is bleeding (a lot) again and under normal circumstances the catheter would stay in but, the doctors decided that the emotional and mental distress that the catheter is causing outweighs any physical good.... so the stupid thing came out :) I will be doing a double shift with William tonight (grandma did a double Saturday and Sunday) so hopefully we have a peaceful night. It's so hard on everyone when a basic need such as sleep cannot be fulfilled. The Dr. did confirm this morning that if William can meet his goals during the next 7 days and CCS/MediCal come in as approved before then, then we will be allowed to go home for 7-10 days ;) Our goals are as follows: - Daily walks -Physical Therapy Exercises. - Eat/drink 700/950 Calories per day - Decreased pain - Zero bleeding in bladder I am so excited about going home but, at the same time I am extremely scared and I have found myself go into "panic" mode just thinking about the "what-ifs". The nurses here have been so great and my biggest concern is that when we get home I am going to come across a situation that I won't know how to handle... WOW, That's a lot for me process. In the meantime I have already been home a couple of times and done some cleaning. However, on Thursday and Friday I will be there all day doing the final DEEP cleaning and sterilizing and furniture moves, yard work, etc. Randell is about 50% complete with the fence so hopefully that will get done during the next 7 days too. Grandma Sally is flying home to NC on Sunday. She will be there with Grandpa (DoHo) for a week before returning to California. I think the plan for now is to have her stay with us for a couple of months. Thank you so much for all the love and prayers! The support that we have received from everyone has been so encouraging and heartwarming that William made a comment about how loved he is and he didn’t even know it ;) Keep on Keeping on. LiveStrong.

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