Day 8

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

Day 7

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

Day 8

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

Day 6

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

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

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

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


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

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


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


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

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

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

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


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

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

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


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

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

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

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

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

We need everyone to keep praying. God is listening!

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

Starting chemo

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

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

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

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

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

Livestrong!

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

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

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

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

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

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

The start of a long journey

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


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

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


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

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

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

Cyclophosphamide

Doxorubicin

Vincristine

He will also be receiving doses of Steriod.

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