Miracles

Below are photos from last week's PET scan report that was finally made available to me today!


I still need to talk to William's primary oncologist, Dr. Anderson but, from my understanding this report states that the cancer is Gone/dead!


The good news is a shock and I think I am too scared to really believe it.....I need actually hear the words coming out of Dr. Anderson's mouth.Silly, I know.


When William was first diagnosed, his biggest tumor was the size of a football (pelvic area) today's report clearly states that there is no tumor, nor is there any sign of it! In the beginning, William's Liver was classified as TMTTC ( too many tumors to count), today's report had me so surprised that I had to read it over and over a dozen times. William has not had any kind of surgery to debulk or remove tumors so the findings from this scan is nothing short of a miracle.


Thank you for all the prayers, they have been answered. Please keep them coming!

Day +31

TGIF - in my last update I mentioned that we would be allowed to leave today, well once again that is not the case. Earlier this week William started suffering from strange abdominal discomfort, nausea, fevers, cramping and sensitivity to abdominal examinations. Long story short, the doctor ordered some blood tests and we were told that William had pancreatitis and a kidney infection. So, we will remain in the hospital for at least another week.

I am happy to report that even though he has faced so many challenges, disappointment, and strong treatment, William is dealing with it all like a champion! My lil man in so strong, stronger than me. William's stubborn, witty, tenacious and loving personality is back to normal and definitely keeping me and the nurses on our toes. :)

Yesterday, City Of Hope hosted it's 17th annual Halloween parade for all the oncology kids. I have to say that I was in awe at the amount of effort, team work, joy, and dedication that went into making this event such a huge success. For a couple of hours, the kids were rolled around the majority of City of Hope's campus in their wheel chairs(iv poles in tow) trick-or-treating around a constructed maze of executive level employees, board members, volunteers, nurses, administrative staff, Disney Channel celebrities, doctors, researches, medical students, interns and local politicians. Every single person was dressed in coatumes and enjoyed the event, laughter, endless candy, games, and jokes. Even with Williams fragile immune system, he was allowed to participate in the event and secure himself more than 4 kg of candy.

As you know we have started the process of re evaluating William's disease/cancer. Obviously we pray that all the tumors are dead- there is nothing that we would love more than for William to return to a lifestyle that does not involve doctors, hospitals, painful treatment, and icky medicine. We hope to receive at least a preliminary report by this afternoon....I will be sure to update the blog as soon as we know anything.

I sincerely hope and pray that Williams health will continue to improve, we are all eager to get out of the hospital but William definately deserves a break from all of this.

This is Williams journey and we will keep on keepin on, with God in our Hearts and His courage in our souls.

Day + 26

It's day +26 and we are still in the hospital which means that we have been for 36 day.....ARGH!

We were hoping to be released this past Friday, unfortunately William's BK virus took a turn for the worse and William started peeing blot clots. So, unfortunately our stay in the hospital got extended by 7-10 days. This entire week was consisted of treatment, anti-viral medications and a lot of hydration- all in an effort to heal the his bladder and permanently get rid of the stupid BK virus. By the time Friday came around, Williams bladder seemed to be healing and his overall health appeared to improving too. Yesterday I met with the transplant doctor and it was agreed that William's body showed evidence of healing and therefor the doctor felt comfortable with a forecasted discharge date of 10/29. Yeah!!!

Unfortunately, our smiles and excitement about the upcoming release was short lived. Last night William spiked an extremely high fever, started urinating blood and blood clots, and to battled constant tummy problems and nausea. Needless to say, the sudden change in his health is concerning and a lot of tests/analysis are being done to determine the primary cause to all of this. The doctor suspects that the BK Virus lead to a possible kidney infection...but that is just speculation and I won't have a definite answer for a few more hours. The only thing we really know for sure is that our stay in the hospital has once again been extended 7-10 days......

Thank you for your continued love and support

Day + 20

We have been in the hospital for 30 days and I think it's safe to say that we are ready to get out of here!

I am happy to report that williams mouth is healing well, and so is the rest of his body :) Engraftment occurred around day + 11 and although the cell and marrow production has been excuciatingly slow, I am thankful for every little bit of progress!

Our goal for the week is for William to remain fever free, eat a minimum of 500 calories a day, drink 1500ml of water a day, and to get some daily exercise/walks. If we can meet all the goals, we will be discharged of Friday. Once we are released, we will move into bungalows located on the hospital grounds(Hope Village) The benefit of staying in the medical housing is the availability of urgent care nurses, and immediate access to transfusion clinic. We will be living at the Hope Village for the 4-6 weeks.

Our first post-transplant scan is scheduled for next week. The data from this scan will be used to determine if any further treatment(radiation etc) will be needed to combat any remaining cancer cells. Obviously we pray that the scan shows NED (no evidence of disease)

For the past several days We have been fortunate to have Randell with us, having the family together is such a great thing!

A huge thank you to everyone that has been sending letters and cards!Williams wall is postered with all the mail he has received:)

This is William's journey and we will keep on keepin' on with God in our hearts and courage in our souls!

Day + 10

This is a picture of what William's mouth/throat and digestrive tract looks like.

As you can tell, the blisters are huge.

Today is day +10 and we were hoping that William's body would start to show some sign of engraftement; however, this is not the case and we were told that William's immune system is actually getting less and less. To assist his body with the extreme immune deficiency that he is currently facing, the doctor has placed him on a drug called IVIG. Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.

A huge thank you to everyone that has been sending letters and cards! I cannot tel you how happy William get's each time he receives mail ;) The emotional boost that he gets from receiving your correspondence is HUGE! Thank you, thank you, thank you!

This is William's journey, and we will keep on keepin' on with God in our hearts and courage in our soul.

Day +9

We were warned. We were told to expect the worse. We were given literature on all the side effects that William would experience from the transplant conditioning. Yet, I don't think I was emotionally prepared to see William go through so much hurt, sickness and emotional turmoil.

William is still battling extreme mouth/throat sores. The pain is at a point where he is no longer able to swallow his own spit and has had to result to drooling into a bowl. The doctors keep telling us that it will get better, and yet it seems to get worse.

Our latest challenge is the extremely bloody stool/poop. Due to the mucositis (blisters and sores from chemo) in the digestive tract and the C Diff, it looks like the blood is from Williams digestive lining (raw and bleeding).

Tomorrow is day +10, and this is normally the estimated time for us to start seeing some sort of cell growth wich means that engraftment is occuring and his body is on its way towards recovery. To learn more about engraftment please click here

In the meantime, we would appreciate it if everyone please continues to keep William in their prayers. I also have a special prayer request for our buddy William Murdock. William M. was diagnosed with Neuroblastoma around the same time that my William was diagnosed with DSRCT. Our families spent a lot of time together at Sutter Hospital and the boys developed a special friendship. William M.'s treatment involved a bone marrow transplant, 12 hour surgery, a lot of radiation, isolation in a lead room, test trials and extended hospital stays away from his 5 brothers. William M. fought an extremely brave battle and beat the cancer! Last week he had his central line (broviac) removed and spent a few days at Disneyland with his family. Unfortunately, 3 days into the Disneyland adventure, William suddently started complaining about chest pains and a sore ankle....long story short, his cancer has returned.
Julie, William M.'s mom keeps a blog of William M's battle, please feel free to read the blog and leave the family with words of encouragement!. http://ittakesvillages.blogspot.com/2011/10/choosing-hope.html

This is William's journey and we will keep on keepin' on with God in our hearts and courage in our souls