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!
Tuesday, April 6, 2010
Monday, April 5, 2010
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
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
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
Sunday, April 4, 2010
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
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 :).
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:
CyclophosphamideDoxorubicin
Vincristine
He will also be receiving doses of Steriod.
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