The good, the bad, the ugly and some hope.....

It has been brought to my attention that with all the excitement about our LA trip, I completely forgot to update everyone on William's pinewood derby last week.  DRUM ROLLLLLL......William won his first four elimination races; unfortunately he lost his 5th race by .003 seconds..... Such a bummer. Out of all the participants (40+ total), William placed 15th. We all thoroughly enjoyed the day and William was proud of his accomplishements!

Our trip to LA was a memorable and relaxing experience! William had a lot of fun hanging out with his grandpa and exploring the interesting beaches of Santa Monica, Venice and Long Beach.  We also had the oppertunityt to take William to "Hollywood". William was a little dissapointed that Hollywood was not filled with celebrities walking around everywhere but, he had a great time exploring all the stars, visiting the chinese theater, and taking photos with some of his favorite characters, Spongebob, Shrek,Elvis and Elmo.

William and I returned to Sacramento yesterday afternoon. Unfortunately our day yesterday started at
4:30 am yesterday as Grandpa had a 6am flight out of LAX; Fortunately, the drive was back was filled with little traffic, a lot of eye-spy games, and countless jokes courtesey of William's imagination.

Upon our arrival in Sacramento, William had a clinic visit to check his blood counts and ANC levels.  During the appointment I asked the Dr. if he had spoken to either of the doctors in LA? Long story short, the conversation between us ended up in the parent conference room (nothing good ever comes from that room) where I had an emotional melt down. .........................Before I get too side tracked with my emotional jibber jabber, let's review some facts from the consults we had this week.

Consult number 1

Dr. Clarke Anderson at City of Hope.  

The meeting was extremely positive and discussion included stem cell rescue, whole liver radiation, and high dose chemo.
Consult number 2
Dr. Marcio Malagolowkin at Childrens Hospital of LA.

This consult was not as positive but, treatment options included debulking surgery, Chemobilization, and possibly doing a stem cell rescue.  O' and I need to mention that due to some confusion at the hospital, Dr. Marcio did not have the opportunity to view William's scans prior to the meeting; therefore, everything discussed during our consult was based on assumptions and estimations

The meeting yesterday was a detailed and honnest review of the following: 

William's disease is in the following areas

*Lungs -microscopic

*Mediastina

*Liver-Bulk of the disease
*Spleen

*Retroperitoneal Lymph node

*Left Testes
*Multiple bone masses including spinal cord

Yes, this is a lot but keep in mind that this is a drastic positive improvement from the initial diagnoses 10 months ago.

We have two treatment options:
*Balance and maximize quality and quantity of live, knowing the inevitable outcome.
*Pursue cure at all costs knowing that historical statistics on this disease are not good.

If you know me, then you know that I am not going with option 1. We are fighting this!! William is an amazingly strong little boy and he deserves the chance to grow old! I am not naive, I understand the odds, but 1% is still more than 0.

Now, let's go over how the above mentioned facts correlate with the treatment options discussed with both doctors in LA.

*Whole liver radiation

Not an option. Radiation would mean a delay in chemo and a delay would allow the cancer in all the other areas of the body to grow and spread.

*Chemobilizatin

Not an option. Due to the fact that the cancer is in both lobes, 80% in right and 20% in left lobe
*Debulking surgery

Not an option. There are too many disease sites and recovery would delay chemo.
*Stem Cell Resue
Not an option. Progressive disease in bones

The current and realistic treatment plan:

For the next 3 months, William will do a combination of the following:
Temador and Irotecan for 10 days in an outpatient setting.
VP16 and Carboplatin for 5 days inpatient at Sutter

Temador and Irotecan prevent the cancer cells from growing and spreading.
VP 16 and Carboplatin kill the cancer cells.

Our goals with the new plan is to accomplish the following:
*Shrink all disease to microscopic levels
=Stem Cell Rescue
*Kill the 20% cancer in left liver lobe
=Right liver lobe can be removed and Chemobilization would be done in left (remaining) lobe to kill any microscopic disease
*Stablize disease in all organs
=Remove spleen, testes and retroperitoneal mass
*Completely kill disease in lungs
=No further treatment needed for lungs or mediastina
*Radiate bone disease
=Bone marrow transplant

Once all the removal, radiation, chemo and bone marrow transplant has gone as planned, William will need to receive a liver transplant. Because of the strict FDA regulations regarding transplants, William will not be allowed to receive a transplant in the US. Basically, our best chance for liver transplant is for us to find a reputable doctor, surgeon and hospital outside of the US that would take 1/3 of my liver and transplant it into William.

As you can imagine, there is a lot to think about and a lot of information to process...

Keep on Keepin' on. Live Strong in God's promise of healing.

















Theraputic break from reality...

William and I have been in southern California with Grandpa for 48 hours and already we feel like different people. It is amazing how some sleep, a relaxed schedule and a lot of sunshine can change your entire outlook on life. 

Yesterday we spent the morning hours on the beach where William was fascinated by seagulls, seashells, and sea enenemies. William's laughter and bright smile made me realize that he needed this break from reality as much as we did.  Yesterday afternoon Granpa, William and I spent several hours at City of Hope Hospital where we met with Dr. Clarke Anderson. The meeting with Dr. Anderson was very encouraging and  extremely informative. The following are some of the main items that we discussed:

-1. City of Hope is willing to do whole liver radiation;Whole liver radiation is extremely rare and practically unheard off, but due to the miracle of some new technology that happens to be at City of Hope, Helical Tomotherapy is a valid option for destroying all the cancer is William's liver.

-2. City of Hope believes that a stem cell rescue and bone marrow transplant is William's best resource in beating this monster. Due to the reality that William has undergone 11 rounds of chemo, there is no guarantee that we would be successfull in getting enough stem cells BUT, at least they are willing to try YIPEE!!!!

-3. Ph. Balance diet has done a lot for William's body. Dr. Anderson mentioned that William's bladder recovered as well as it did because of the specialized diet.

-4. Natural supplements that we are using are probably doing more harm than good. The natural remedies that William is taking works by placing the cancerous cells in a "sleeping" or "hibernation" state. Chemotherapy is only effective against active cells and won't do anything to destroy the cells are not.

-5. The current chemo that William is on should be changed immediately. Dr. Anderson recommends VP16 and Ifosphomide as both of these drugs are aggressive in killing cancer cells and the combination is a good recipe for preparing his kidneys and bladder for stem cell harvest.

-6. City of Hope has extensive experience with DSRCT
-7.  I like Dr. Anderson and William seems comfortable with him.
-8. Patients have private rooms with beds for parents and a refrigerator.
-9. Monthly housing is available on campus at a low rate.
-10. City of Hope will be willing to transfer us in as soon as mid February.

 ------Most importantly, Dr. Anderson reminded us how amazing William's progress has been. William's tumor cell death and shrinkage is amazing and I believe that it is due to William having such good response that Dr. Anderson is so eager to help us-------You go William, I am so incredibly proud of you!!!

Tomorrow the tree of us will travel to downtown LA where we will be meeting with Dr. Marcio Malogolowkin, an internationally known oncologist that specialized in rare pediatric liver tumors. We were told by Dr. Anderson that Dr. Malogolowin provided him with 1/2 of this knowledge on Sarcoma cancers and that he is one of the best he has ever met....  I am eager to hear what Dr. Malogolowkin would suggest and recommend...

Today was our only day that was free of appointments. We spent the wonderfully warm and sunny exploring the Santa Monica pier, chasing seagulls on the beach and people watching at Venice Beach (YIKES). Venice Beach is an interesting location, that's all I am going to say about that....

Anyway, thank you for checking in on us!

Keep on keeping on. Live Strong in God's promise of healing!

T.G.I.F.

I am happy report that today is our last day of chemo for the round 11. Woo Hoo. I want to thank all of our supporters that wrote to use with advice about the relentless hiccups. Fortunately we were able to get a prescription muscle relaxer and within 30 minutes of William taking his pill, the hiccups stopped!

Tomorrow, if the weather and fog cooperates, there is a possibility that William will go on an airplane ride. One of our kind blog readers, Lynden, has offered to give William a ride in his Piper taildragger Bush plane. As you can imagine, William is super excited about this and because the entire thing depends on the weather, he has been anxiously watching the weather channel all morning. If tomorrow's plane ride does get postponed due to bad weather, we will try to reschedule the trip for the following weekend.                                                                         Sunday is race day - YIPEE!!! There has been so much excitement in our household about this race. All of the conversations between Randell and William seem to be related to gravity, weight, speed and aerodynamics. If you have ever played a card or a board came with William, then you know how absolutely competitive he is and how determined he is to be the best at everything he does. I believe that during the last several months filled with hundreds of board games, we have taught William how to be a humble and gracious loser. I hope that William does well in his race but, if he does not end up being one of the fastest racers, I hope that he remembers that the fun and adventure is in the actual activity itself and not the trophy.

We have been so blessed by the kindness of others. As you know Jeff Gonsalves, author of the Subnorm series, will be donating all of the February profits from his book, Fork in the Road to Apocalypse, to William. Purchases can be made via Amazon.com.

Also,thanks to the kindness and perservearance  of a 17year old young lady named Steph, the Chicago Fire restuarant on J street in Downtown Sacramento will be donating 15% of their profits for one night to William.

I beleive that this will be on February 21st, but I still need to confirm this. I will keep you posted!

Now for some BIG NEWS! GiftToCure is in the process of putting together a grand and regal masquerade ball.  We will have several local celebrities and public political figures attending the event. If all goes as planned, we will raise a lot of awareness about DSRCT and a lot of money for the much needed research and family assistance.  There will be a lot of information about this event in the upcoming weeks!!!

As you know, Grandpa is flying in from NC on Sunday and therefore William is counting down the hours until he gets to goof around with his partner in crime. We will be spending the few days that my dad is with us in the LA area. We have a couple of consult meetings scheduled with DSRCT experienced oncologists and radiologists. Hopefully we will return from LA with good news and a treatment plan that provides hope and a treatment plan....

We ask that everyone please keep their prayers for us focused on save travels, helpful and willing oncologist and healing of all of William's cancer and tumors.

Keep on Keepin' on. Live Strong in God's miracles and the healing in William's body.

Hiccups, Road Trips and the Green Hornet

Good morning everyone!
Today William will be receiving his 9th day of chemotherapy for round 11. I am happy to report that he has no side effects well, at least that is according to the doctors. ;)  For the past three days William has been dealing with some very persistent and annoying hiccups. Our doctors tell us that hiccups are not side effect of the chemo, but we are not convinced ;) We have tried everything we can think off to get rid of the hiccups, nothing seems to work. If you have any advice to share with us…. Please let us know….Anyway, if a few days of hiccups are the only side effect that we have to deal with, then I will not complain!

During the next 7 days, the entire family will be very busy with several exciting events and adventures. On Sunday William will be racing his derby car, the Green Hornet, and William’s infamous partner in crime A.K.A. Grandpa will be flying in from NC.  While grandpa is here we will all travel down to LA where we will have two days of appointments with DSRCT experienced oncologists. William and I love road trips, grandpa says it’s because our family has gypsy blood and we feel the need to explore roads and travel the world ;). We are both extremely excited about spending a time with Grandpa and being in LA…..

Last night William received a gift from a group of kind and BIG HEARTED people in Houston - The following video shows William opening the box and loving the presents

Keep on Keepin' on. Live Strong in God's promise of healing and miracles!

Chemo Recipe - Answering some Email Questions

I have received some e-mails from other cancer patients wanting to know the dosage and protocol that William is on.

This is the information I have:

Days 1 - 5
Temozolomide PO  100MG dose daily 1 hour prior to Irinotecan
Irinotecan        IV    10MG dose daily

Day 6
Rest

Day  7-12
Irinotecan       IV    10 MG dose daily

Day 12 -21
Rest

I hope this helps...

Day 5 of Chemotherapy Round 11

It is a beautiful sunny Saturday in Sacramento and we are spending the first half of the day receiving chemotherapy at Sutter.  Fortunately, as I am typing this update, William is finishing up on his chemo and we anticipate being out of here within the next hour - Yipee.

The great part about doing chemo on an outpatient basis is the fact that William is now once again able to participate in cub scout events.  Last night we attended a den meeting and William was presented with two red beads that count towards his progress and rank. ;) I am so proud of my little man. Even though we have spent a ridiculous amount of time in hospital during the last 10 months, he still progresses towards the accomplishment of achievement of his Bear Cub rank. 

The much anticipated Pinewood Derby race is in 8 days. Two of our hospital buddies, William M. and Spencer P. are also cub scouts  and they will have their races around the same time that William has his so, all three boys will be keeping track of their race times and the next time they see each other they will compare times amongst themselves and determine who had the fastest car :)

I have an update on our quest to find a Sarcoma Center. Yesterday I received a call from City of Hope  and it looks like they might be interested in treating William. So as a preliminary action plan, William and I will be spending the first week of February in LA during which time we will have consult meetings and tests with the oncology teams at City of Hope, UCLA Jonsson, and Cedar Sinai . I am still waiting to hear back from CHLA and CHOC, hopefully they return my calls and emails soon.  I am most interested in hearing back from Dr. Marcio Malogolowkin who is apparently an internationally renowned expert in liver tumors and pediatric cancers. Dr. Malogolowin  is the Division Head of Pediatric Oncology/Hematology at CHLA.

I want to remind everyone about the wonderful fundraising event that will start on February 1st. Jeff Gonsalves, author of the Subnorm series will be donating the profits from all February sales to William ;) Books can be purchase on Amazon .

Keep on Keepin' on. Live Strong in God's promise of healing and miracles.

One day at a time!

It's Thursday night and we are done with day 3 of chemotherapy round 11.

For those that do not know, William and I got discharged from the hospital yesterday evening. Due to the length of this protocol, we decided that it would be best  if we switched to an outpatient setting. William and I will drive to the hospital everyday for the next several days where he will receive Irotecan via IV for 90 minutes. Temador, the second drug in this chemo cocktail, is taken at home via oral pill.

I must admit, I was extremely hesitant about doing the chemo-thing at home. I have become extremely reliant on our fabulous night nurses at the hospital and to be honest, I was not sure if I would be able to handle everything on my own. BUT, after spending a very quiet and relaxing night at home, I quickly realized that we made the right decision.  After all, there is nothing more therapeutic and comforting than having the entire family together :)

I want to thank all of you that wrote to us regarding the Irotecan and Temador combo. Now that I have received confirmation that this protocol has indeed been used without the presence of Avastin or Vincristine  in other DSRCT patients, I feel significantly better and my nerves have calmed a little. I am still upset that the doctors did not feel that it was not necessary (or cordial) to consult or inform me about the changes in advance.

For those that are interested, the major and most anticipated side effect of the two chemotherapy drugs are as follows :

Temador

• seizure (convulsions)

• numbness or tingling on one side of your body
• loss of appetite
• nausea and vomiting
• unusual weakness
• pain or burning when you urinate
• white patches or sores inside your mouth or on your lips
• hair loss
• diarrhea
• mild skin rash
• dizziness, blurred vision
• sleep problems (insomnia)
• unusual or unpleasant taste in your mouth.

Irotecan

• Hair loss
• Poor appetite
• Fever
• Weight loss
• Constipation

• Shortness of breath
• Insomnia (see sleep problems)
• Cough
• Headache
• Dehydration
• Chills (see flu-like symptoms)
• Skin rash (see skin reaction)
• Flatulence (see abdominal pain)
• Flushing of face during infusion
• Mouth sores
• Heartburn
• Swelling of feet and ankles

Fortunately, we have not yet had to deal with any side effects.  I pray that William continues to do well with this chemo yet at the same time I mentally correlate bad side effects with effective cancer cell death (I know that I sound twisted)

For those of you that live in Northern California, William now has a donor club with BloodSource. It does not matter what your blood type is, please donate! William's donor club number is X158.
The donor club allows us to get William's transfusions at a discounted rate.. so please donate.

With the assistance of my mom, we have been reaching out to all of the Sarcoma cancer centers in California.  MD Anderson in Houston, Texas no longer seems to be a viable and realistic treatment center for us. It appears that due to the policies of the hospital's Insurance and Medical Contracts Department they are not willing to go through a necessary step that is needed for William's insurance company to approve out of state coverage. So, in a nut shell we are in a horrible catch 22 position with MD Anderson and William's Insurance. So, in order for us to move on to our next options for treatment we are veraciously looking for the "best" location and oncologist.  Our possible options are as follows:

University of California Davis Sarcoma Program
(Sacramento, CA)

www.ucdmc.ucdavis.edu/cancer/Specialties/bone_softtissue.html

Cedars Sinai Sarcoma Page
(Los Angeles, CA)
http://www.cedars-sinai.edu/Patients/Programs-and-Services/Sarcoma-Program/

UCLA's Sarcoma Program
(Los Angeles, CA)http://www.cancer.ucla.edu/index.aspx?page=662

Children's Hospital of Los Angeles
(Los Angeles, CA)

www.childrenshospitalla.org

City of Hope Sarcoma page, adult and pediatric
(Duarte, CA)

www.cityofhope.org/ccc/db

University of California, San Francisco
(San Francisco, CA)cancer.ucsf.edu

I would appreciate prayers for us to find the ideal Oncologist and Hospital. Thankfully, because William will have to finish this current chemotherapy round and recover from neutropenia before we to transfer out, we have some time to get everything arranged. 

I can't help but to get extremely overwhelmed and weighted down by the enormous task of researching and contacting all these doctors and hospitals, if anyone has any suggestions for us, please let me know.

Keep on Keepin' on. Live Strong in God's promise of miracles and healing!

Mass Confusion

It's Tuesday evening and we are at Sutter Resort and Spa.

The boys and I had a wonderful weekend together. Randell and William finished the exterior body of William’s derby car and the first few layers of spray paint is on. The only thing left to do is add the lead (weight), add the roll cage, final exterior paint and decor, and test drives ;). William's car is green so he named it the Green Hornet!

Ever since William’s diagnoses 10 months ago I have not been able to sit through an entire sermon at church without becoming a crying blubbering mess. Church is one of the few places where I don’t find myself holding my breath in a futile attempt to not cry. Instead, it has become the one place where I can take that deep breath, expand my lungs, and soak Randell’s shirt sleeves and shoulders with tears. This Sunday’s message by Pastor Tim was amazing and it stirred some emotions and thoughts that I have not wanted to deal with for a long time, if you are interested in hearing it, you are welcome to listen to the podcast on iTunes or you can listen online : http://www.gvcconline.com/audiofiles.aspx.

Towards the end of the service while Pastor Tim was finishing up on his message I started drying off my tears, blowing my nose and emotionally putting myself back together again. And then it happened, the music team started to sing a song that instantly sent tears to my eyes and a hard knot in my throat. “Through It All” is a song that I vividly remember hearing my grandma and grandpa singing.  My maternal grandparents were pastors in the communities that they lived in. I remember being a small child and thinking that my grandpa was an angel because he always had sick, sad and broken people coming into his home so that he could pray for them and fix their problems :)  I have such fond memories of my grandparents repeatedly singing this song while going through everyday things like cooking and sewing.  I know that this must sound silly to some, but hearing that song yesterday was the encouragement, the sign, the message, the prescription I needed… If any of my cousins are reading this I wonder if you too have good memories of hearing Ouma and Oupa singing this song. .

After having a very emotional Sunday and  leaving church with a renewed sense of hope and faith  I was certain that I could face anything.  We have now been at the hospital for less than 6 hours and all the hope and faith that was so abundant yesterday is now completely gone.

Before I get into the detail of this chemo, I want take a moment to remind you about the conversations I had with the oncology team last week. 
Conversation 1 : I asked the team to please consider doing Irotecan, Temador, and Avastin.
Conversation 2:  Team came back with a suggestion of doing Irotecan, Temador, and Vincristine. Using Vincristine made sense because it is a widely used chemo in sarcoma patients and William had great success on it with the P6 protocol.
Conversation 3: I agreed to do the chemo with the understanding that once I provide supporting information for Avastin , then the team would give it a shot. 

Okay, so moving on....We got to the clinic today and found out that the team had decided to take treatment in a completely different direction. Yes, this was all a complete surprise to us.  I think that Dr. Hsu saw my immediate shock and anger and therefore quickly started explaining to me that this new protocol is actually a protocol that Dr. Anderson @ MD Anderson designed, approved and wrote medical articles on.. I think that Dr. Hsu thought that by him providing us with this chemo protocol from MD Anderson that I would somehow be happy. Maybe he though that I would be grateful for the new information. Truth is, I am not happy or grateful. I am furious and during my melt down in the clinic I was on a rampage of verbally puking all the words of betrayal, disappointment, anger, frustration, confusion and anxiety that I have stored in my heart for 10 months... 

There are certain unwritten rules between oncology doctors and oncology mom. Two of those rules are as follows:

Rule No. 1  - Don't decide on treatment plan without consulting the "Momcologist". Treatment plans are to be discussed and decided on collectively before implementation.
Just because you are a doctor it does not mean that I trust you and therefore I am not going to submissively agree with a treatment plan that you have not made me aware of and I know nothing about

Rule  No. 2- You do not give a "Momcologist" a last minute treatment plan, especially not when the treatment starts in 2 hours and she knows nothing about the treatment, side effects,   etc.
Just because you are a doctor it does not mean that I trust you and therefore I am not going to submissively agree on a treatment plan that I not only know nothing about, but that I just found out about 5 minutes ago.

I asked Dr. Hsu why the treatment plan changed and he stated that it was because one of the chemo's is now oral vs. IV.  I asked him why this made a difference in whether or not he received the Vincristine and he told me "Well, I don't know, but that is how the study was written and studied" I don't like getting answers like that - AlI take away from that is that this doctor who is supposed to be saving my son's live can't even give me an educated answer as to why IV chemo is different from oral and why one method vs. another means that Vincristine needs to be completely excluded.

The new treatment is Temador and Irotecan....nothing else....and it is done in a two week treatment plan  vs. a five day treatment plan with the Temador,Irotecan and Vincristine.

What I am really angry about is that the decision to change treatment was decided on last week during the weekly team meeting. Why didn't any one bother to call me? Why did no one give me heads up and tell me that we will be in the hospital for 2 weeks instead of 5 days?

 After leaving the clinic I sat in car considering our options
Option 1-Go home, pack bags and leave for Houston. We would wait in Houston for the insurance to get figured out. This would mean that William would be without chemo for an unknown amount of time.....
Option 2-Go home, pack bags and drive down to LA and get admitted into a sarcoma center...This would mean that William would be without chemo for an unknown amount of time....
Option 3-Stay at this hospital, start this weird chemo that I know nothing about and put together a plan of action.......

I decided on option 3. It's been more than 30 days since William's last chemo and it would be too risky to wait for another treatment. So, from what I know and from what I have read we will be here for about 10 days. Hopefully during the next 10 days I can make some sort of progress for with the transfer to MD Anderson. If MD Anderson does not become an option for us within 7 days then I will move to Option 2.  UCLA Jonsson Comprehensive Cancer Center has one of the busiest sarcoma centers in the nation; Cedars-Sinai has a really good sarcoma center too. Both of my backup hospitals have experience with DSRCT and both are sarcoma center.

The reason why it is so important for William to get treated at a sarcoma center is because sarcoma cancer centers are far more educated on the cancer, they are more willing to take necessary risks, they have a better understanding, they know the chemo better, they have the resources for a wide range of treatments, procedures and studies.

So, here we are at Sutter going through day 1 of 10 in a new chemo protocol. So far so good.

Keep on keeping on. Live Strong in God's love for us

Less T.V. and more books.....

We hope everyone is enjoying the weekend, we certainly are. 


A very special opportunity has been presented to us and I am extremely excited to share this with everyone.  Jeff Gonsalves, the author of the Subnorm series, sponsors a child with chronic illness every month on his website.  All profits made from sales of his books in the month of February will be donated to William.  YIPEE!!!!

"The Subnorm series focuses on adults and children who are psychic due to infection by the Klepto virus, which has been rumored to cause enhancement of a neglected portion of the brain, or development of an extra lobe with extrasensory abilities. Every mutation serves a purpose–such as cutaneous respiration in a boy who has trouble breathing due to asthma attacks, or a pinwheeling third arm in a child who is grossly obese. Unlike X-Men, the characters are not superheroes, but frightened people trying to hide their affliction from the Genetics Bureau.

For more information about Jeff and his books, please visit his website at http://jeffgonsalves.com/ Books can be purchased online at Amazon or through the publisher at http://www.wildchildpublishing.com/

William gets 100% profits from the books  Jeff sells in February. Needless to say, the more people who buy Fork, the more money is generated.  Did I mention that Jeff was not only a talented author but that he is also one of William's fav oncology nurses ;)

Please support this great opportunity and buy Jeff's books in February!

Keep on Keepin' on. Live Strong in God's miracles!

No Place Like Home

Good morning everyone!

Today will be our second day at home an d it is wonderful!

Yesterday William and I spent a sunny winter California day walking around our property with the dogs. We explored all of the overflowing seasonal streams and collected buckets full of dirt. We live in an area where gold was abundant during the gold rush era and for that reason William is convinced that we have some undiscovered gold in the streams. Most of the day was spent gold panning in icy cold mountain stream water. Unfortunately William was utterly surprised and complety disappointed when he did not find any gold.
After a brief period of feeling sorry for himself, William came to the conclusion that all the gold is still hidden in the tons of quartz rock that we have lying around everywhere so, today our time and mental energy will be spent on finding a way to crush the quartz and extracting gold. Yes, in William's mind it is just THAT easy to find gold.
It's so entertaining watching the thought process of a little 8 year old. A few minutes ago he was in his father's shop comparing a regular hammer, sledge hammer, rubber mallet and ax. I could actually see his little curious brain working on the mechanics of which tool would work better. William has finally decided to use one of his wood carving tools and the regular hammer to chisel away at the quartz... I will get the band aids and ice packs ready ;)

It is William's favorite time of the year and the annual Cub Scout Pinewood Derby race is fast approaching. This weekend Randell and William will be working on building William's derby car and hopefully we will have some time to do a few test drives ;) William is scheduled to start chemo next week Tuesday so we have high hopes that he will be done with neutropenia by the 30th, the day of the race. Actually, now that I am thinking about it, the race is such a big and long anticipated event and if by some small chance William is still neutropenic, we will slap a mask on his face and participate in anyway ;) Besides, these are the memories that last a lifetime and I am not about to allow this stupid cancer to stand in the way of something that is so important to William.
Keep on keeping on. Live Strong in God’s miracle of cancer healing that he is working in Sir. William (The 2011 pinewood derby race winner)

;)

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

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.