Making Memories

In prep. for all of the time we are going to be spending indoors and in isolation, we are absorbing all of the fun and son that we can. Treatment starts on Monday so we plan on spending this weekend at the WWII Air Show and the beach.

Here are a few photos.
Please remember to keep praying. We have a difficult road ahead of us in the next 3 months.

Scan Update

PHOTOS IN THIS POST ARE OF WILLIAM AND SOME OF HIS NURSES FROM SUTTER.

Yesterday, William had a PET scan done at City of Hope. Shortly after the scan was completely my mom, William and I met with Dr. Anderson. Now, before I get into the preliminary results from the scan, let me explain how it works. In a PET scan, William is given a nuclear sugar mixture that the cancer cells absorb. The uptake amount of the nuclear mixture into the cells are measured in the densities or brightness levels that appear on the scans. Normal cells have an SUV (standard uptake value) of around 1 to 2. Cancerous cells are higher and are normally around a SUV of 5.  The more uptake a cell has, the brighter it shines on the PET.  So basically, an active, thriving and living cancer cell eats a lot of the nuclear mixture and therefore appears as a bright spot on the scan. If a cell has an SUV of around 2 to 4 then the brightness of the cancer is not as apparent.  

 I am happy to report that Dr. Anderson was extremely excited about what he saw in yesterday's scan. Even though the radiologist has not yet done his official review on the scan results, Dr. Anderson said "William did not light up like a Christmas Tree" as he did in February of this year. 

I cannot tell you how happy we all were to hear the news! Even though William does still have a few bright bright spots,  they are significantly less than they were! The spleen, pelvic lymph node, and one large tumor in the liver were the only bright spots ;)

Dr. Anderson took the time to actually bring up all the scan on a computer monitor and show us the amazing results! The chemo that the Sutter team did on William worked, there is no denying it but, Dr. Anderson did tell us that now, before the cancer becomes chemo resistant, it was time for us to start on our path down aggressive treatments. On Monday, William will start 5 days of Ifosphomide and VP16 with a bladder protection Rx, Mesna. William's extreme bladder damage caused by the first two rounds of chemo (P6) in April of 2010 forces us to be careful with the types of chemo used, however we also need to be aggressive enough to shock and kill the remaining caner. Dr. Anderson is working with his colleagues to determine the best dosage for William.

Step 2.  After 5 days of Chemo, we will return to the Long Beach house for approximate 10-14 days. During that time William will receive daily Neupogen injections to stimulate the growth of white blood cells. Around day 10, we will return to the hospital for daily blood draws. Like fertility tests, there is a "magic hour" or a window of opportunity during which William's body will have produced enough stem cells for the doctors to go in and "rescue" them so that they can be used in his bone marrow transplant.  

Step 3. 5 Days of chemo
Step 4. 21 days of recovery

Step 5. 5 Days of Chemo

Step 6. 21 days of recovery

Step 7. BONE MARROW TRANSPLANT!

If all goes as planned, the BMT (Bone Marrow Transplant) will be done in Late June or Early July.

IT IS IMPORTANT TO NOTE THAT WILLIAM WILL BE NEUTROPENIC FOR A LONG LONG LONG LONG LONG LONG LONG LONG TIME AFTER HIS BMT.  
As you can imagine there will be plenty of other medical procedures and events happening after the BMT is done. = Whole liver radiation and surgery is obviously going to be a big part of treatment but, for now our road map for the next 3 months is set in stone!

Keep on Keeping on.

Live Strong in the evidence that miracles are happening in Sir. William's body!

 

Overdue Update

HAPPY EASTER!

I hope everyone has a wonderful, safe, memorable Easter Sunday.

Randell, William and I arrived in Long Beach on Friday night. The boys and I have spent the last two days enjoying the beach and making wonderful memories. Unfortunately Randell had to fly home today but, we hope to see him again in a couple of weeks. 

Our first appointment at City of Hope is tomorrow - I am looking forward to the new chapter in William's treatment plan, and I am no longer scared, nervous or anxious

After tomorrow's meetings we will have a clear understanding and outline of William's new protocols. We will also have a rough schedule and calendar to work with so that we can plan a trip to Camp McDonald, Disneyland and Lego World. Obviously we will also be planning a couple of trips back to Sacramento but, I think it is safe to assume that Randell will be coming here more than we go there.

I want to send a HUGE thank you to all of the fabulous, loving, and wonderful nurses at Sutter Hospital.  Over the last year we have spent more time with those nurses there than we did with our families. The care and love that was given to William is just amazing, and I truly believe that a big part of William's success in fighting this disease has been due to the friendship, love and commitment he received from his nurses. Thank you to all of the Sutter family members for everything you did... You will be dearly missed!

I have received some emails asking for our new mailing address, I promise to get that posted here the site within the next week. In the meantime, please continue to post messages of encouragement for William here on the blog. He truly loves reading your messages!

Keep on Keeping on. LiveStrong in God's love and promise of healing. LiveStrong in the good memories that get us through the tough times, and LiveStrong in the kindness, Love and commitment of our friends and family.

Presents in April

we are home

Yesterday, William received two realy LARGE presents!
A family friend of ours worked some magic and to our extreme delight, William is now the proud owner of an Ipad.

Also, William received an envelope in the mail from an anonomous friend. The return address is a PoBox in Single Springs but, there was no name, no card an no note. SEE PHOTOS BELOW.
Whoever you are, THANK YOU, THANK YOU , THANK YOU, THANK YOU.

The support from everyone has been extremely overwhelming and equally appreciated!
Please remember that we need prayers!

ENJOY THE PHOTOS! William's smile was so big yesterday that his cheek muscles hurt at bed time last night.

Making Plans

Our departure date for the long awaited transfer to City of Hope in LA is approaching fast and I am getting nervous.  We are still in the hospital! I was really hoping that we would be home by today but, it looks like we will be here until Friday. I am a little stressed out about still being at Sutter, I am feeling so pressed for time and I fear I may not have enough time to pack, plan and prepare for our move. I have already started making a list of all the things we need to pack and do before we leave. HOPEFULLY I don't forget anything.

Yes, we are still in the hospital. ARGH! William is still extremely neutropenic and is therefore "behind double doors" He is not allowed walk around, participate in activities in the play room, or even visit with buddies in their rooms (but they do sneak into ours ;)  ) William's frustration and boredom is at an all time high, unfortunately there is nothing I can seem to do to make it better. Poor lil' man is tired of playing XBox or Wii Games and every time I mention playing a bored game, building a puzzle, or doing some crafts, he looks at me the same way he does when I tell him to do homework or read a book.

If you would like to say good bye to us before we leave (and I have not already contacted you to set something up) please let me know.  As long as you have not had ANY vaccinations or  immunizations  in the last 6 weeks, not currently congested or sick, in perfect health and willing to entertain William ,then you are welcome to visit us while we are in the hospital here at Sutter. I just ask that you please check in at the nurses station and then "sanitize" before entering our luxury suite ;)

I have had a couple of you ask about our new mailing address in Long Beach. Once we get settled in, I will let everyone know what our new contact information is. My mom will be joining William and I in LA. I don't think that I would be able to go through the next few months without her by my side helping out and giving support. 

I am absolutely sad about the thought of being so far away from Randell. It's a horrible thing when a family needs to be split like this. Obviously we will try to have him visit  when possible. I just don't like the thought of William being so far away from daddy and me away from my husband for such an extended period of time. It makes me sad just thinking about it. . . .

Thank you for all your continued love, prayers, support and friendship.

Keep on Keepin on.
Live Strong in God's love

The Lessons We Learn

Lesson for today - Miracles happen! Today a year ago William was in the ICU, his belly was extremely swollen (72cm), his testicles were the size of large oranges, he had a bladder that was so damaged by chemo that a catheter had to be inserted. Today a year ago William walked for the first time in weeks. This is a link to his old Blog and the entry Blog from 365 days ago

I don't often read the old entries as they make me extremely emotional but, I am glad that I read this one because it gave me some much needed perspective.

William and I are still at Sutter Resort and Spa but, it looks like we may go home tomorrow or on Wednesday. I am happy to report that all of the viral nasal swabs and blood cultures have come back negative, this is great news. Unfortunately I still don't know what caused his fever spikes, I guess it is just one of those weird things that happen to ChemoKids.

I am not sure if any of you read the news in USA Today regarding Exide Technologies in Frisco Texas and the EPA investigation into DSRCT diagnoses.... Long story short, Exide is one of the largest producers of stored energy batteries. The company has more than 631 locations in the US and it is also spread out among 80 countries. The report got me extremely interested and I started doing my down digging and research. This is a link to a map I created on google. Purple thumbtacks indicate the location of a DSRCT patient and the blue markers indicate and Exide Technology location. I am not saying that there there is a definite link but I encourage you to take a look at the map and come to your own conclusions. NOTE - Zoom in on the USA to get a good idea of what I am talking about.DSRCT and Exide Map

I am happy to report that William's hair is growing so fast and it is so beautiful! His hair is pure white and extremely soft ;) Unfortunately it will all be gone within a few weeks. The chemo that awaits us in LA is extremely strong and hair loss sure to happen.

While doing some research on DSRCT I stumbled across the following "Important Lessons" that a DSRCT dad wrote shortly after his son passed away from this horrible disease. I wanted to share this with you for no reason other than my hope that it may help someone, comfort someone, or answer a question that has been lingering in the mind of a parent (Like me).

Lessons:

1.      Always get second or third opinions. Doctors are used to it. They won’t be mad with you.

2.      One of your best chances is when the disease is not metastatic or is only locally metastatic. Ask for a very aggressive surgery with wide margins. Couple it with radiotherapy (IMRT/proton/ etc). Maybe an autologous transplant. Radiotherapy later in the treatment increase/prolong neutropenia (low neutrophils) and thrombocytopenia (low platelets). Transplant later may not be a good decision.

3.      The treatment has to be holistic. By it I mean using the traditional medicine for sure but coupling it with alternative medicine (attention: when there is no conflict!!), biotech, spirituality and love.

4.      Monotherapy doesn’t work most of the time. The disease is so aggressive that a cocktail has to be used continuously. Try to use chemo to activate the death pathways of the tumor cells and use other drugs/herbs/ etc. that block as many survival pathways as possible.

5.      Take the initiative. Study. Research. Take the articles to your doctors. Give them ideas. Conduct as much as possible the treatment. The Internet is an amazing tool. By studying you will be able to know more about the disease that any doctor since they don’t treat only DSRCT patients and see only a very few DSRCT patients in their lives.

6.      Choose a doctor that has experience with the disease. Choose a doctor that is not afraid of testing new protocols, a doctor that never gives up. Choose a doctor who is not afraid of what their peers will say about his recommendation/ treatment.

7.      Listen to everything. Talk to everybody. Read whatever is available. Most of the time a good advice comes from the least expected place/person.

8.      There is no defeat in advance. Every case is different. Even among all of you. Statistics are not useful at all. Don’t listen to them.

9.      Believe all the time. Get the strength from inside you. Make plans for the future. Look how placebos work! I personally believe that you can cure/treat yourself as well as any doctor/drug. Talk to your body!

10.   Don’t live the disease. Run away from it. Enjoy life. Enjoy every day and every moment.

Keep on Keepin' on.
Live Strong in God's miracles - They happen every day!

Back at Sutter Resort and Spa.

Yesterday William and I arrived at the hospital for a routine transfusion; however, before the transfusion even began William spiked a low grade fever of 100.5.  For a normal healthy person a temperature of 100.5 is nothing to be concerned about but, because William is neutropenic (has not immune system) any fever at all raises red flags and also requires an admit into the hospital for a mandatory 72 hours of antibiotic and observation.

As much as I was trying to haggle and bribe our way out of an admit, I am happy that we are here because William had some seriously high fever spikes last night.  As per protocol with fever spikes, William had a couple of blood cultures drawn (with each fever spike).  Should the cultures come back positive with any sort of bacteria growth, we will get an automatic 10 day stay filled with antibiotics. However, I don't think that this will be the case as William has a brad new central line and we have been extra sterile and careful with the maintenance. 

William has had a croupy cough all week so last night the doctor ordered a chest x-ray, and this morning we were told that  William has bronchitis.  Anyway, as long as the blood cultures keep coming back negative for growth, we should be able to go home in a couple of days.

Our first official appointment at City of Hope has been confirmed and set in stone! YIPPEE!

We really need everyone to please keep their prayers focused on a few things-
1-William's body will be able to provide us with the stem cells needed to do a rescue
2-William is a viable candidate for a bone marrow transplant
3-William's treatment at  City of Hope is successfully, safe, and pleasant.
I realize that praying for a "pleasant" treatment may be a little weird but, the last thing we want is for William to be miserable and/or unhappy.

Randell gave William one of his old cell phones and now William is the coolest kid around ;) with the promise of being able to talk to his friends, sutter nurses, family and "fans" whenever he wants,William feels a lot better about our move down to LA.  For those of you interested, William's cell phone number is 530-919-4459. PLEASE keep in mind that this is a pre-paid phone and so William has limitations on the amount of calls and texts that he can receive and make. 

Thank you for your continued love, friendship, prayers and support.

Keep on Keepin' on.

Live Strong in God's healing and miracles.

LA here we come!

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My apologies for the delayed response but, there have been so many changes during the past 48 hours that I wanted to make sure that all my facts are correct before I posted any updates.

This morning I discussed William's future treatment with Dr. Lee, one of William's current oncologists.  Long story short, William will be transferring to City of Hope in Duarte (LA area) Unfortunately it does not look like William's current oncologists would be able to remain as a part of the treatment plan, so William and I will be relocating  to the LA area for least 3 months.

Thanks to the generosity of family friends, William and I have a house that we will be renting in the Long Beach area while doing treatment. Hopefully my mom will be able to stay with us and help out with the chaotic treatment plan that awaits us. 

We are incredibly grateful to Sutter and all of the amazing nurses and doctors that have treated William during this last year; our move is in no way a negative reflection on anyone here. Our decision to transfer is based on the fact that  City of Hope has more treatment options, experience with DSRCT, and they also have some of the best technology and resources available.   Dr. Clarke Anderson will be William's new oncologist.

The decision to transfer William has not been easy one; my family and I have spent multiple sleepless nights and tear filled conversations discussing the pros and cons.  The cons are terrible and heart breaking but, the pros out weigh them.. Basically, what it comes down to is the fact that we can continue the current course of maintenance chemo knowing the  ultimate outcome, or we can seek some controversial treatment  that will provide us with a chance to beat this thing and give William a real fighting chance. 
This was not an easy decision and I am sure that there will be times that we may regret making it, but it's the decision that Randell and I did a lot of praying, fact finding, crying and soul searching about. 

A big part of the new treatment plan involves a stem cell rescue so that a future bone marrow transplant may be performed with William's own stem cells. Because William has already been through so much chemotherapy and cancer has spread to the bones, there is no guarantee that his body will be able to provide us with the amount of stem cells needed to do a rescue but, we are going to try our hardest! 

Our tentative plan to start treatment at City of Hope around the end of April.  I am sure that there will be plenty of changes and updates between now and then so I promise to try my best to keep everyone updated and informed. If anyone should at anytime be confused, please let me know so that I can try my best to explain.

Please keep us in our prayers! We have an long road a head of us and we could use all of the love, prayers, friendship and hugs in the world.

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

Update to let everyone know that we have been home for a little more than a day.

Late yesterday afternoon I had a brief phone conversation with one of William's nurses, on our behalf she discussed William's bone scan with the oncologists here at Sutter. It seems that the oncologists are not convinced that the new finding in William's sinus is cancer (at least not DSRCT). Their reasoning  is "DSRCT does not occur in that area". The doctors don't have an explanation of what the new finding is but statistics and medical facts tell them that it is not cancer.  So, after hearing this from the nurse and speaking with Randell, we have decided that we want a new diagnoses. 
In January a fellow DSRCT patient was re diagnosed with Ewings sarcoma, a cancer that is extremely similar to DSRCT but occurs in the bones. No one knows if his initial diagnoses was wrong or if his cancer changed into Ewings; eitherway, it is something that has me wondering if William has Ewings too.
If William does have Ewings then this would explain the rapid cancer growth in the bones and also the cancer in the sinus. 
I am not sure if our current oncology team would be willing to do a re diagnoses, nor am I sure that I would want them too...... Long story short, City of Hope in LA will most likely be our new home hospital. There are still a lot of facts for us to consider, questions to ask and statistics/logistics for us to workout but, there is a strong possibility that William and I will be relocating to LA. I will have more details on Monday afternoons.

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

Before we get started with today's update, I ask that everyone please take a moment to enter your e-mail address into the "follow by email " box  --------------------------------------------------------->>
Entering your email address will allow for you to receive automatic updates, vs. me sending them.


Moving on...

William started chemo and for some reason, he is taking this round a lot harder than he  has in previous 5 rounds.... All day William has been struggling with extreme nausea, headaches, diarrhea, hiccups, and cramping tummy. What can I say, today is not a good day.

I received the much anticipated Bone Scan report and I am at a loss of words..... The report is below so feel free to read it. Even though it sounds like there is new cancer, some of the existing cancer is apparently dying and therefore, William is considered to be "Stable" I am not taking the news of "new" cancer very well, in fact I am having a little mini melt down.  DSRCT in the maxillary sinus is extremely rare, so not only does William have an extremely rare cancer, he now also has it in an extremely rare location.

I still have a lot of unanswered questions regarding the report but, I am scared to ask those questions as the answers may lead to even more negative findings.

Ending of a long day.

I am happy to report that the hole in William's lung appears to healing AND the air that leaked into the cavity has been absorbed and is therefore no longer a large concern...

As with everything else related to William's treatment, I have learned so much during the past 36 hours ( I am seriously considering becoming an oncology nurse)

For those of you that are interested, here is a quick rundown of  everything that has happened..

William's first central line:

William's Second Central Line:

William's Pneumothorax:

Anyway, William is spending another night at Sutter. His blood pressure has been running unusually low so we will be keeping an eye on it. If everything continues to improve then tomorrow we will be starting chemo, thus spending an additional three days at Sutter Resort and Spa.

William had his bone scan and pelvic CT scan this morning. I am a little nervous about the bone scan as halfway through the procedure the nuclear medical tech left the room to "ask the Dr. a question". When the tech returned a few minutes later he had a strange confused look on his face and stated that additional scans were needed of the spine.... I don't know what that means, nor do I want to read too much into it (but I am!) Hopefully the reports will be ready for me to "analyze" first thing in the morning.

William is doing really good. He is back to being an extremely energetic, loud, funny and messy little 8 year old boy.  Besides a little discomfort and sore chest, there is is absolutely no sign of Sir. William being sick, and this is a blessing!

We appreciate every one's prayers, phone calls, text messages, emails and visits...

Keep on keepin on.
Live Strong in God's miracle of healing.

Update

X Ray results throughout the night - No change -
William's blood pressure, blood oxygen level, heart beat and breathing are all within normal range SO even though the hole is not closing on its own or as fast at they would like, he is in no immediate danger.

Waiting for the surgeon to arrive so I can find out what our next course of action is going to be. I have no idea how this stupid little whole is going to get fixed....

I will keep you posted.

Keep on Keeping on.
Live Strong in God's miracle of healing.

It must be Monday

Today is March 28th, my 30th birthday and William's surgery day.

Let's start with some positive news - I received William's PET scan report, it reads as follows:
"Whole body PET scan showing multiple hypodensities throughout the liver associated with low-grade FDG activity. When his PET scan is compared to the prior dated 12/28/10, these hepatic lesions have remained stable in size, number and in low-grade FDG activity. All nodal sites that were previously identified have normalized to background with the development of no new sites of abnormal FDG activity to suggest metastatic disease in new anatomical locations. Findings suggest stable to improved PET scan when compared to prior scan. "

As many of you know, William had surgery today to place his new central line. In my previous blog post I commented on the small chance that there could be some complications from the surgery.... Long story short, William's lung has a small  hole in it and now there is the concern that his lung is leaking air into his chest cavity which could cause his lung to collapse.

So, here we are in Sutter Hospital trying to make the best of the situation...

William will have lung X rays done through out the night, I will keep this blog updated on the results.....

On Friday night GiftToCure had it's first annual Masquerade Gala. We did not sell as many tickets as initially hoped for but, I am happy to report that those that did attend had a great time and got some great silent auction items at amazing prices;)  I want to thank those of you that did attend, your support is greatly appreciated!

We would certainly appreciate every one's prayers!

Keep on Keeping on. Live Strong in God's miracles of healing!

Surgery, swimming and scans.

William's surgery for a new central line placement is scheduled for Monday morning.  
My mom and I met with the surgeon (Dr. Joy Graf) today and after an extensive Q & A most of our concerns have been addressed and dealt with.
Due to the fact that a vein may only be used once for a central line placement, William's new line will be located on the opposite side of his chest and instead of the line running  through the vein in his neck, the new line will be placed under the collar bone into a vein that runs on top of the lungs(YIKES!!!) The biggest risk with this surgery is that the lung may collapse and/or get punctured( YIKES!!!)  Dr. Graf has been doing line placement surgery for 20 years (@ 2x week) and she has only come across lung complications twice. I feel better knowing that the surgeon has experience, but I am still nervous!

As mentioned in a previous post, William's lack of central line comes with some perks aka swimming ;) For the last couple of days we have enjoyed the pleasures of our local sports club's heated pool ;) William has also been able to take showers, something that has not been done in months as baths are the only option for patients with central lines.  Entry points for the central line into the body has to be kept sterile and dry at all times, therefore William's baths (with the central line) always involved a long tedious prepping process that included saran wrap or aqua guards.  I do enjoy the luxury of temporarily not having to worry about sterile dressings or all the prep work involved with William taking a bath.

While in the hospital last week, William and a couple of our favorite nurses engaged in a much anticipated and planned (on William's part) Nerf War... The video below is just one of the many battles that I captured ;)

Our nurses are more than just medical care providers, they are angels that always find a way to put a smile on my son's face!!! Thank you!!

On Friday morning William will have a PET scan, it will be the first scan that we have done in 4 months and since the start of our new chemo protocol.  Scanxiety (scan- anxiety) is a terrible emotion to have! I ask that everyone please keep William in your prayers! Please pray that the chemo is working and that William's body is in the process of becoming cancer free

Remember our hospital buddy William M? His parents have received the best news ever, William M is in remission. This is such amazing news and I am so happy for them, a little jealous, but extremely happy! Thank you God for healing!  Another one of our hospital buddies, Spencer, finished his last round of chemotherapy last week ;) You go Spencer! We are so incredibly proud of you!

Don't forget that on Friday March 25th, GiftToCure will be hosting a Masquerade Gala at the Arden Hills Resort Club and Spa.  For more information please visit http://www.gifttocure.org/eventforcancer.

 

William and My Mom (Grandpa, we wish you were here)

Thank you for all of your continued love, support, friendship and prayers!

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

It's just not fair!

This weekend the DSRCT community lost another of its family members. Taylor was a 19 girl who had been fighting DSRCT for a little more than 3 years. Last year on her 18th birthday she finished her last round of treatment and was NED (No evidence of disease) for a few a months when the disease suddenly returned again.

For the last three weeks Taylor endured a collapsed lung, breathing and draining tubes, kidney failure, immense pain and constant vomiting; not once did she ever give up! Taylor fought a brave battle until the very end.

I ask that everyone please keep Taylor's mom, Kendra, in your prayers!

Since November the DSRCT community has lost about 10% of its family members (Less than 100 known surviving patients world wide and less than 500 ever diagnosed) I can't help but feel an immense sadness and hopelessness. I despise this horrible cancer and I despise what it has done to so many people. My heart is broken today and I can't seem to find the energy to force a smile.  I try to hide my crying for William because he is not really aware of how serious this disease is, nor am I about to tell him. The last thing I want him to know is that a person with is same disease had earned her angel wings.

I am so frustrated!!!I am angry and I am so terribly sad...It's not fair that there is a mom in Texas that is planning her daughters funeral! It is not fair that so many other people that go through live unaffected by all the horrid events that us DSRCT moms experience on a daily basis. It's not fair that this disease only allows for a 15% chance of 5 year survival. It's not fair that my son is sick and I cannot do a darn thing to heal him. It's not fair that William has cancer!


Taylor does have a caringbridge page, for those of you that would like to leave some encouraging words
http://www.caringbridge.org/visist/taylorhargrove


On Friday night (March 25th) GiftToCure will be hosting it's first annual Masquerade!
The event will be"unmasking" DSRCT. We need every one's support to make this event a success! Event will include a live Jazz band, silent auction, food, drinks, and local celebrities!
Please attend and support GiftToCure in it's quest to fund DSRCT research!
Tickets must be purchased online at
http://gifttocure.givezooks.com/events/black-tie-masquerade-unmasking-dsrct-an-elegant-fundrai

I would appreciate it if you would please tell all of your friends and family members about the event!

Keep on Keepin' on.

Live Strong in God's promise of healing!

Masquerde

Procedure Update

William's broviac has been removed and surgery was a success....
Thank you for all your prayers!

The new broviac will not be inserted for about two weeks ;) This means that for two weeks William will be able to go swimming and participate in some other activities that he has been restricted from during the last year ;)

If everything continues to go well we will be able to go home on Friday. We ask that every one please remember that William's immune systems is still a little compromised and therefore we ask that you please not visit at this time. I will let everyone know once his ANC goes up a little more

Thank you....

Plan of action

William's blood cultures have come back positive for Kokorea Rosea (please feel free to research on internet)

Tomorrow William will have suergery to have his broviac (central line) removed. After surgery a peripheral IV line will be placed and hopefully after three days of antibiotics, his blood will be clean and clear of all bacteria and infection. Next week William will once again have surgery, this time it will be to insert a new central line.

If everything goes as planned and there are no complications with surgery (I am told that it is not a big deal and is often done in outpatient) we will be able to go home on Friday! WOOO HOOO!

Please keep William in our prayers!

Stupid Infection!

On Monday night William spiked an extremely high fever of 103. Needless to say, no one got any sleep that night! On Tuesday when we arrived for our outpatient chemotherapy the nurses took a blood culture (figure out th cause of high fever). This morning we received the call - William received a positive on his cultures.
So, here we are at Sutter Resort and Spa........
Shortly after arriving, William was given a dose of Vancomycin (broad antibiotic) and shortly after receiving the Vancomycin, William broke out in hives and had an anxiety attack. So, long story short..... Chemo Suck, Antibiotics Suck, Germs suck, Pain sucks, Watching our little boy going through all this crap SUCKS..

No News is Good News

WOW, I cannot believe that is has been more than two weeks since my last update! I am sorry for not writing sooner and keeping everyone updated...actually, there's not much to update you on.

William is doing really well; after his last cycle of VP16 and Carboplatin his blood counts took a huge dip in numbers but, that was to be expected.  So, besides the dozen or so transfusions that William has received during the last two weeks, we really have not been doing a whole lot.

Today is day 1 of William's 10 day outpatient chemotherapy.  William was originally scheduled to start this more than 10 days ago but, due to his blood counts being so low the entire process was postponed.

So, here we are in the month of March, a month that in my opinion most American families would correlate with March Madness, Mardi Gras,  St Patrick's Day, Ash Wednesday and Lent.  In our house, March will no longer be the happy and fun month  in which we celebrate Grandpa's or Mommy's birthday, nor will it be the month in which we would normally celebrate our anniversary, instead it is the month that we look back on remembering the horrible words spoken by William's pediatrician "There is no easy way to say this, your little boy has cancer"

I guess it is to be expected that for the last week I constantly find myself looking back and remembering all the events that happened exactly 1 year ago.  William's diagnoses was not an easy one...It took us almost 4 months filled with emergency room visits, several different pediatrician consults, and countless urgent care appointments before the tumors were found and his cancer had already progressed to stage 4.

Today there has been a lot of should-offs, could-offs and what-ifs running through my mind  and heart.....We have so much to be grateful for so I will not allow myself to dwell on the negative, but still I'm sad and terribly scared.

I wrote this a few months ago in the old blog, and I feel it is appropriate to say it again.....

You know that feeling you get in the bottom of your stomach when you suddenly realize that you forgot to do something important? You know, the feeling of nausea, anxiety, stress, fear, anger, and disbelieve. It’s a sensation that turns your feelings into an emotional storm, a Hurricane Katrina in the center of your heart and mind. Well, that is the feeling that you have all time when you are an oncology mom.

Don’t get me wrong it’s not all bad, there are good days too, no, there are great days! But, even during the best of times and the most memorable days, your eyes are always on the approaching storm. It is that awareness and constant knot in your stomach that is a relentless reminder of the horrid reality you now call life...

 Being an oncology mom comes with a lot of emotions, pressures, education, and physical strains!

Emotions- No, I am not talking about the everyday happiness, anger, fear and stress. I am talking about anxiety that without any warning will send you spiraling into a tornado of confusion, frustration and an emotional disconnection. I am talking about anger, hurt and a sense of helplessness that causes me to be an unstoppable blubbering mess. I am talking about the inconceivable emotions that William is attempting to deal.

Pressure- Pressures to stay on top of medication and broviac maintenance schedules. Pressure that we place on ourselves to stay on top of the treatment road maps, protocols, and all other possible test trails. Pressure to maintain a balance in our relationships and not neglect those we need as our emotional anchors. Pressure from financial strains and fears. Pressure to always be prepared for the unexpected. Pressure to be your child’s advocate because you know that no one else will be. Pressure to try harder at being the person, daughter, sister, cousin, wife, and mom that others want you to be, think you should be, or expect you to be.  Suddenly, the pressure of keeping everyone informed, educated, happy and content, all falls on your shoulder, whether you want it to or not!

Education – When you enter the unwanted society of oncology parenthood you unknowingly enroll in “Oncology School”. The first week is a blur; all you will vaguely remember is the small pieces of information written on the documentation, explanation brochures, and reports provided by the medical team. The second week is spent doing research and finding associations that could provide you with support. Somehow you also try to figure out the medical language because you know that if you don’t, you will be left with more confusion than what you started with. Knowing the lingo of ANC, WBC, HGB, RBC, Neutropenia, PET, CT, MRI, Bone Scan, Nuclear Medicine, BP, and NPO will lead to a conversation with doctors that feels almost alien. Weeks 3 and beyond you will transition from student to professor. You will turn into an encyclopedia of facts and a diary of events. You will turn into a mathemagition and start gathering facts, odds, statistics and probabilities. All of the information that you now have will somehow be used to come up with an equation that will result in patterns, behaviors, results and expectations.

Physical Strains- We all deal with the pressures and stress of seeing our children suffer in different ways. Some of us gain weight and some of us loose it (yeah, I am not one of those lucky ones). Some of us struggle to regain any form of control in our stormy emotional lives, so we do something drastic to our appearance (Yep, that’s me). The point that I am trying to make here is that the only physical resemblance Oncology Parents share is the look of constant exhaustion and immense fear. We might as well be wearing a scarlet letter on our shirts; Spotting us is as easy as looking at the dark circles under our eyes, dried tears on our cheeks, smell of chemo pee and vomit on our clothes, and a constant frown line that will forever be tattooed on our foreheads. The only way we can blend in with the “normal” parents is to somehow find a balance between sleeping, being a care provider, and finding a way to cope with our new realities.

It is devastating how this storm has left areas of disaster in practically all the regions of our old life!! Randell and I are blessed because not only do we have each other, but we have the support and companionship from a lot of you! So much has changed in the last year that it is hard to determine the next year ahead of us. The only constant is that God is in control and our faith and believe in Him is what will calm our hearts and fears.

If you are an Oncology Mom or Dad,  I want to let you know that YOU ARE AMAZING! We are a sister/brotherhood of relentless fighters that will defend our children’s rights for proper medical care, emotional support and the best medical staff available. We are a sorority/fraternity of parents that will unfortunately forever be bonded together by the shared pain, fears, guilt, anger, sadness and happiness. We are not alone, we have each other and the love and support of those around us.

We would appreciate every one's continued prayers for complete healing!

Loiss and Randell

The proud parent's of Sir. William