Weekend Update

This afternoon William received his first negative lab test results for c-diff YEAH! Finally, after an exhausting (and stinky) month filled with fevers, dangerous blood pressure, antibiotics, extreme weight loss, and thousands of sad tears, William's gut is stabilizing and healing. Getting rid of the c-diff means that we finally overcame one of the largest obstacles we faced in qualifying for the transplant...I cried happy,exhausted, and celebratory tears when we received the results...
Last night in the midst of a medicine induced sleepy haze,William got up to use the bathroom and collapsed/fainted/fell. Thankfully, in the few seconds it took me to reach him, his PCA (patient care assistant) walked in and was able to alert the doctor and tend to William. Luckily William did not get hurt and after a full exam and tests the doctor felt comfortable that there was no damage, or concussion, only a bruised hip. Chances are that the incident was brought on by William getting up and out of bed too fast causing his blood pressure to dramatically shift. Anyway, there is a small likelihood that William may have something called peripheral neuropathy. Peripheral Neuropathy is a side effect of Vincristine, one of the chemotherapy drugs that William has received a multitude of. My "mommy instinct" tells me that this is not the case so I am not worried - the doctor on other hand would like to do some more tests before he will make a determination.

Some more good news- we get to go home (Ronald McDonald House) tomorrow. Next week William will go through some tests for the Peripheral Neuropathy, and God willing, everything goes well and we will be able to return home to Randell by the end of the week. If we are fortunate and blessed with the opportunity to return home, We will be able to remain there until the time comes for us to return to City of Hope for the dreaded Disease Assessment tests and determinations. However, should something happen this week that will prevent us from returning to Randell, it will only be a temporary restriction. The doctor has assured us that he will allow us the much needed, wanted and deserved time to go home to Northern California before we start with the Disease Assessment.

Thank you everyone for your love, support, friendship and continues words of wisdom. We hope everyone enjoys the rest of their week! 

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our souls.

Three Legged Dog–ramblings and thoughts of a momma.

 

A few months back I was watching a show on Animal Planet regarding a three-legged dog and the physical, emotional, and mental challenges she faced after losing a leg. Last night, in what I am sure was an Ambien induced sleep coma, I dreamt of the silly dog and her feats.

I woke up this morning realizing that I am that three legged dog, not literally of course.  The shock of William’s diagnoses is still (and forever will be) a raw fact that I deal with on a daily basis. A prognosis such as this is not something you simply accept, at least not for me, not yet. There have been the occasions that I’ve allowed myself the selfish self-pity moments to sit in the proverbial dark corner and lick my wounds. Through that gesture and accepting my emotions for what they were, I realized that similar to the dog, I was mourning the loss of the lifestyle we used to have. No longer able to participate what was once everyday family activities, the dog felt a sense of loss and grief. I was/am saddened by the loss of our once simple, casual, predictable and uncomplicated lifestyle. I was/am mourning the loss of my home, sleeping beside my Randell, and being a normal mommy with normal mommy problems.  

Rhema Butler, a DSRCT warrior that watches down on us from heaven, was the inspiration behind her mother, Kirsten’s, new web/blog site. I highly encourage everyone to take a box of Kleenex and spend a few minutes reading the entries. The honest, no hold back, in your face reality about Momcologists is written from self-experiences and factual information. –NOTE- Not recommended for the naïve!  http://www.momcologist.com/?page_id=28.  In a section of yesterday’s posting Kirsten wrote the following “One day while my daughter was in the middle of a long in-patient hospital stay I found myself really feeling a sense of loss and desire for those “old ways”, for MY house, for MY stability. I opened an email my mother sent me entitled “Where ever you are, BE there”. It was one of those quaint, wrap it all up in a pretty bow philosophy kind of emails. But something in it really struck a chord with me. A realization came over me that I was so intent on aching for how things “used to be” and longing for “my old life” that I was missing out on my present living. I was so overly attached to the concepts in my head and heart for how things “ought to be” that I was causing myself additional suffering. And even worse – EVEN WORSE – I was allowing those attachments to distract from what was right in front of my face: my daughter. I was missing out on enjoying her, visiting with her, loving her, experiencing what each moment was waiting to give to not only me, but to that daughter of mine. In that moment of realization I made a concentrated effort to let go of those attachments and enjoy what unfolded in each moment. It was a conscious decision and one I worked on many times throughout the weeks and months that followed” Kirsten did not write the post specifically for me; however, the words could not have come to me at any better time. For me there was a sense of comfort in knowing that the emotions and fears I face were the same as those of another mom and she was able to provide experience and eventual resolve to my grief.

Similar to the dog, I have now accepted the realization that our past lifestyle is in the past and it will never again be the same. In order for me get past this sadness, and get back to the responsibilities at hand,  I need to embrace the reality and somehow carve out a future filled with equal excitement, joy, laughter, dreams, love and family values. 

Adaptation is an amazing thing, the three-legged dog spent a few months mourning the loss of her old lifestyle but her sadness was replaced with the immense joy of her new favorite activities, skateboarding and water skiing.

Today is a better day; I am refusing to let it be anything else. William was placed in isolation so unfortunately we are a little restricted to what we can do but, I will still embrace each moment and experience without allowing myself to mourn for something that will never again be as it was.

Below are a few of the memories we have from the past 18 months and looking at them now I am reminded about how blessed we truly have been.

As always, this is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our souls.

.

I want an Easy Button...

Remember the Staples adds with the "that was easy" slogan and the red Easy button? Today I wish I had one of those buttons. Most of the time our struggles and emotions are manageable, but today I don't have the strength to manage them, nor do I believe I would want to! I want an Easy Button. I want a little button that can be pushed so that my lil boy can once again be healthy and my heart didn't feel so heavy with a stew of emotions.

It's been more than two weeks since our last update and as you can imagine there is a lot to fill you in on. As you may recall from the last entry, William and I were to return home for two weeks and then return to LA this week to start the BMT. Staying true to it's MO, the cancer had different plans for us and quickly interfered with what ever expectations we had.

William and I were able to spend three fabulous days at home with Randell when out of no where William got a fever of 104.5. After an ice-cold bath, Tylenol and what felt like several hours of excruciating horror (watching your child being so sick is an experience that no parent should ever experience) William's fever dropped to a manageable degree and I was able to temporarily medicate the symptoms while we traveled back to LA. The road trip back to LA was an absolute nightmare filled with chills, vomiting, and diarrhea. Let's just say that I am thankful for the roll of paper towels and wet wipes that are permanently located my car.

Once we arrived back in LA, William got admitted and hooked up to all sorts of fluids,antibiotics, and supplemental nourishment.Turns out that my poor guy had food poisoning and to make things worse, the C-Diff had still not gone away....William and I spent a week in the hospital before finally being discharged and going home to our new medical residence at the Ronald McDonald House of Pasadena. Obviously the BMT (bone marrow transplant) got postponed. Our new roadmap and timeline for transplant was penciled in for September.

After spending a much needed quiet weekend at the Ronald McDonald House, William and I returned to the hospital yesterday for what was anticipated to be an "easy" chemo (something to keep the cancer at bay while we wait for transplant) what I was not anticipating was a nightmare conversation regarding whether or not William was still a candidate for transplant. After having a severe emotional breakdown in my car (in traffic on the 210) I was able to wrap my mind around everything that had been discussed. In two weeks William will go through a series of scans, tests, biopsies, and reviews, the process is known as disease assessment. William's assessment will be done to determine if #1- his tired and frail body will be able to survive the BMT and the extremely toxic chemo that accompanies it. #2- does he meet the criteria of minimal disease being present.

So here we are, back at City of Hope while William receives chemo. William is already is experiencing the horrid side effects of nausea and migraines ....sigh....................... What a horrible reality it is to know that for my child to survive this cancer, his body has to be poisoned to the point of unmentionable torment.

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our soul!

Update

William is doing well and I am happy to report that we are currently at home in northern California, we will be here for about two weeks thus allowing William's body to recover and prep for the bone marrow transplant scheduled to start on the 7th.

As you can imagine, William is eager to see some of his friends and scout buddies, ufortunately my laptop crashed and I no longer have anyone's contact info.....so, I ask that if you/your kids want to set up a play date with William - please give us a call at home 530-621-4864.

Thanks
Loiss and Randell!

411

The following notes and points are from several discussions with doctors today

1-perforation in large intestine
2-cause of perforation? = that part of intestine got inflamed and stretched so thin that it caused the perforation- think of it as a deep stretch mark- the original shape, elasticity and muscle function was pushed beyond it's capabilities.
3-cause of intestinal inflammation?= unknown but possibilities are stool, pills, gas build up from c-diff fungal activity, could be something that had been there for a long time but chemo and indigestion caused area to be more damage- No one knows for certain-
4-high possibility that surgery would be required to cut out the "weakened " section of intestine before bone marrow transplant.
5-surgery not guaranteed, will need to wait for most of air and fluid to clear before firm decision made
6-possible surgery plan to be discussed as soon as tomorrow
7-won't be coming home this week
8-William won't go to camp the following week
9-bone marrow transplant postponed (yet again) until this is all completely fixed and healed.

Back in the hospital….

I have found that sometimes writing the blog updates are therapeutic, then at other times like today, it seems

like such a heavy burden on my emotions...reliving everything that we have experienced during the past four days and typing down all the events is extremely taxing - in my heart it feels like if I had to think back and remember what happened then it meant that this was not all just a bad dream, it was our reality.

On Saturday afternoon William was admitted with a high fever, increased heart rate, and decreased blood pressure.

On Sunday after a rough night filled with constant fever, chills, voting, and diarrhea he had extreme pain in his belly, and while giving him a belly rub I noticed what looked like a hernia. The doctor ordered an ultra sound-results revealed a lot of air and fluid build up around his intestines, William had a perforated large intestines.... Immediate actions were taken to prevent toxic/septic shock, relieve pressure and fix

issues at had.

On Monday was placed, William was put on a continuous infusion of Albumin (hormone/protein that enables the blood/intestines to absorb fluid) William was also put on an extremely strict diet restriction - he is not allowed to eat or drink anything- his intestines needed to rest and the doctors had to ensure that Williams body was passing gas and processing what it needed to.

Last night was a miserable ordeal. Several times during the night William woke up in a panic and unable to breath, the pressure in his abdomen caused his lungs to have some expanding restrictions. Extreme pain and anxiety lead to a lot if vomiting and that lead to migraines- domino

effecting everything in his body....

Right now, he is peacefully sleeping- we have continuous scans and ultra sounds scheduled throughout the day. A lot of doctors are watching him closely and paying attention to even the smallest of changes and blood metabolic panel adjustments.

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our soul!

Overdue Update

Hi all, my apologies for the overdue update….

After a 5 day stay at City of Hope for William’s 18th round of chemotherapy, William was released early yesterday – Just in time to spend some time with Grandpa and watch the fireworks from Long Beach.

William is doing well. His weight is finally picking back up, and holding steady at 57 pounds (10 pounds more than what he was 6 months ago) The weight gain is crucial for his bone marrow transplant as he will have very little appetite after the BMT and will therefore most likely be receiving nutrition via IV.

This week will hopefully be a calm and boring one… I sincerely hope that we can avoid any infections, fevers and complications. If we are fortunate enough to avoid any complications and further hospital admits,  then next week William and I will be returning home to Randell for 5 days. Upon our return from Nor. Cal.  William will be off to a much anticipated Camp Ronald McDonald http://www.campronaldmcdonald.org/ for seven days of fun, laughter, friends, activities and mischievous behavior.

I will try to update again later this week.

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our soul!

Almost feels normal.

The past week has been one of the most enjoyable, relaxing, rewarding, normal feeling weeks that we have had in a long, long time.

Last Friday Randell arrived in Long Beach. Having him with us for the weekend was amazing. On Saturday we went to Legoland – WOW, what an amazing time! I can honestly say that we had more fun than I had imagined. The only rule we had for the day was that William have as much fun as possible. He rode almost all of the rollercoaster, ate as much junk food as he could fit into his tummy, and happily ran around the waterpark dodging fountains and water cannons.

 

On Sunday, Fathers day, Randell had to fly back to Sacramento; Fortunately we were able to  spend the morning together.

“It takes a very special man to love through loss, laugh through challenges, cry on the rough days, hug all of us through the bumps of life and appreciate every step of the journey”  I am so grateful for Randell, he is an amazing man and a terrific father!

On Monday morning we returned to City of Hope. William was scheduled to start his next round of chemotherapy, unfortunately the infection battles from last week took a huge toll on his body and his blood counts. Dr. Anderson decided to postpone treatment for a week, a decision that made all of us smile; A 7 day break in treatment meant that William and I could return home to Randell (in time for William’s birthday)

On Tuesday morning, William and I got on the train and headed home to Randell!  Since we arrived, life has seemed refreshingly normal. It is an amazing feeling to be home, to be in a familiar environment and to be together as a family, all of us together under one roof!

William woke up on Wednesday, his birthday, with a big smile on his face. He was so happy to spend his birthday at home! Randell and I took William to Chillis for a birthday lunch; It’s a family tradition to eat Baby Back Ribs on William's Birthday.

William and I are behind in sending out Thank You cards to everyone that has sent him cards, letters and presents. We would like to thank Aunt Linda and Uncle Don, Trish and Kaleb, Arnie Burns, Debbie White, Ron and Leonna, Uncle D,  Grandma and Grandpa, and everyone else for the birthday presents and cards!

We will be heading back to Long Beach on Sunday as treatment will continue on Monday. The original plan was for us to start with the Bone Marrow Transplant; Unfortunately, the insurance co. had decided that we needed to do two more rounds of chemotherapy before they will be willing to cover the cost of the transplant. This does place a kink in our original treatment roadmap, but all things happen of a reason and so I will accept the decision and continue on as needed.. I have decided to adopt the Serenity Prayers as my daily Momcologist prayer.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right if I surrender to His will;
That I may be reasonably happy in this life and supremely
happy with Him forever in the next.

Amen

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our soul!

Bacteria, Complications, Miracles and Emotions

 

Today is day 7 of our stay at COH. I am happy to report that William is doing a lot better and that all of his vitals have dramatically improved. Also, we are being discharged today!!

As you know William tested positive for Gram-Negative bacteria, yesterday we learned that the exact bacteria diagnoses is Stenotrophomonas Maltophillia, this is a rare bacteria for humans and apparently not easy to treat. I am just happy that we caught it early enough and that William responded so well to the 5 different types of antibiotics he received. Sensitivity to antibiotics is one of the items that makes this bacteria so hard to treat, thus the reason for William receiving to many, the only problem is that because William received so much, he developed C-Diff. C Diff is a serious bacterium that forms in the gut and causes all sorts of icky and smelly side effects. It is caused by antibiotics. In serious cases, C Diff can be fatal. If you want to know more, please click here Clostridium_Difficile.

Another obstacle we had to deal with during the week was Platelet Refractory. In laments terms,   Platelet Refractory means that the body no longer accepts transfusions because of tolerance/immune system problems. The only way to treat this is for William to receive transfusions from a donor that is HLA (human leukocyte antigen) matched.  Basically, each transfusion that William receives will need to be matched with a donor (think of it as getting a bone marrow transplant, specific criteria and biological matches are needed)  As you can imagine, this has not proved to be an easy task. I got tested earlier in the week to see if I am a match, please pray that I am.During a normal treatment month, William receives around 6 transfusions.  As you can imagine, this is a big concern for all involved as it may cause serious complications for upcoming the bone marrow transplant.

Since  William got admitted on Friday, he has had a dry cough that has been plaguing us. An X ray from earlier week showed that William’s lungs appeared normal, ruling out any infection or fungus. The unexplained cough raised concerns that the cancer in his lungs returned; yesterday a CT scan was scheduled and performed. This morning we received the report, William’s lungs are fine. There is no presence of cancer in them. Also, the scan showed that William’s body is responding really well to the 2 cycles of chemotherapy that he received during the last 6 weeks. Two noted metastic tumors show decrease in size, and the necrotic tumors are all stable…This is AMAZING, and an answered prayer. Thank you God for healing the cancer!

Emotionally this has been one of the hardest weeks for me. The diagnoses of a bacteria rarely found in humans, and C-diff, combined with the complications of Platelet Refractory caused some serious anxiety, anger, confusion, depression and sadness. Today I can look back at the week and be grateful for the miraculous healing, creative doctors that are not afraid to think outside of the “normal treatment” procedures, and the support of my mom! 

William’s birthday is on the 22nd. Some of our friends have already sent e-mails and text messages asking for our mailing address and gift ideas. Our address is listed below, as for gift ideas….anything airplane related, or a gift card to GameStop would be appreciated. Note, Gifts are nice, but the words of encouragement and love are always in need! 

Mailing Address..

2201 N. Lakewood Blvd

Suite D, Box 294.

Long Beach, CA 90815.

 

We have a great weekend ahead of us and I am grateful that William's birthday celebration did not need to be cancelled or postponed ;)

Thank you for all of the support, love and words of encouragement! Please continue to pray for William’s healing.

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our soul!

I don’t like surprises…

Early yesterday morning William spiked a fever of 101.5, as per protocol we immediately took him into the clinic for lab work and antibiotics. Initial blood work showed that William was neutropenic (as expected), a little dehydrated and extremely low on his platelets. Our visit to the clinic started uneventful but 2 hours into his antibiotics he spiked a fever of 103.5. The doctor admitted William for observation, more blood tests, hydration, transfusions and fever control. By 7pm last night William’s temperature hit 104, his blood pressure went extremely low and his heart beat shot up to the 150’s. 

No one got any real sleep last night as our room was constantly filled with doctors and nurses. William had a lot of people on high alert last night, I am just grateful for the extremely friendly, kind, and funny doctor that was on call. Dr. Armenian managed to crack several smiles on William’s face, a task that was almost impossible last night.  Anyway, lets skip several hours ahead and make a long story short, William’s blood culture came back positive for gram-negative_bacteria.This morning the doctor told us that the bacteria is most likely from an infection in the gut (such as e-coli) The bacteria had spread into his blood stream causing sepsis. Sepsis is basically a whole body infection – feel free to Google it. I don’t like Wikki’s description so I am not posting it.

William’s BP, heart rate and temperate all normalized around 9am today, and then just as we all started to relax, this afternoon around 3 William started having chills again and spiked another fever of 103.5.

Next Friday Randell will be coming down to spent the weekend with us. In celebration of William’s birthday we are all supposed to go to Lego Land on Saturday – Unfortunately, William’s current hospitalization will last at least 10 days…..I really don’t want to tell William that his birthday party will be postponed/cancelled. I really don’t want to break the horrible news to him, he is going to be devastated.

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our soul!

Friends make the world a better place!

Williams 6 day stay on the hospital (for chemo) ended yesterday! O' and the great news is that for the past few days there has been zero,none,zip,null blood in his urine! Woohoo...for those of you that don't understand my excitement, let me just say that for the past year William has consistently had small trace amounts of blood in his urine. Everyone originally thought that it was from the damage done by the first round of chemo when in fact, City of Hope diagnosed him a few weeks ago with having BK Virus in his bladder. Anyway, the bladder is being treated now and obviously the treatment is working.
William's bone marrow transplant has a preliminary schedule of starting as soon as July 5th (the week off) Before the transplant can be done there is a huge assortment of tests that need to be performed, among those is the ever dreaded PET scan. For William to remain a transplant candidate, his tumors need to continue showing positive responses to the chemo, the BK virus needs to be eliminated as any trace of it could cause kidney failure during transplant neutropenia, and last but not least, William needs to keep his weight up above 50 pounds.

My friend Erin and her kids were in the LA area this week, and to William's absolute delight, they spent a couple of nights with us in Long Beach. Having Erin's kids around was the source of extreme giggles, running around, loud chaotic fun, camping out in the living room with the boys, and entertainment. William needed the interaction with the kids, he had the biggest smile on his face all day today!

Today our dear friend Rhema left the confines of this world, with it's pain and injustice, and entered into her eternal freedom! For those who are so inclined, Rhema's family could certainly use monetary donations as they face the high cost associated with the death of their loved one. There are several ways people can donate to this need. You could either donate via Paypal ~ Please use dayspringjoy@msn.com as the recipients e-mail address depositing money at any West Coast Bank via the For the Benefit of Rhema Butler account. You could mail Kirsten a check ~ Be sure to make the check out to Rhema Butler as it will be deposited into the aforementioned bank account ~ mail it to Kirsten Butler - 5513 College Glen Loop SE #B-201, Lacey, WA 98503

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our soul!

Thoughts and Fears

Imagine having the name of your child on a list, a short list. A list comprised of the names of the DSRCT warriors in the world. Now, imagine experiencing the loss of one of those warriors/friends...one-by-one, the names are crossed off. Imagine the fear and thoughts going through you mind. Imagine the nightmares and terror.

A fellow DSRCT mom told me that "the reality of Rhema's current battle is all too "real", and she is absolutely right. This is a terrible and sad time for a lot of us but mostly for Rhema's mom and siblings. On Thursday I found myself in an emotionally breakdown, and then a close friend and wife of a DSRCT warrior in heaven wrote the following words "The nightmares and thoughts will come and then they'll go. You will have breakdowns but then they are cathartic and last only a few moments. Get your upset out and then go back to laughing and hanging out with your son.... It's not tonight that we hate and wish away it's everything bad leading up to this... Cancer doesn't always mean death. William has his own path to go down"

Yesterday evening William and I took a stroll through the Japanese gardens at City of Hope. Our walk allowed me some time to think and process the words from my friends. You know what I realized? I realized how blessed we are... Yes, William is sick, but so far he has surpassed all of the expectations and goals. Yes, William is not living the live that any 8 year old would voluntarily pick but, during the past year he has experienced more adventures than most people would in a lifetime, and he has made more friends than anyone I know. Yes, our lives are forever changed by this disease but, most of those changes are for the better. Yes, our lives are little complicated and exhausting but, this is why God blessed us with the help of my mom, compassion and support of great friends, love and wisdom of Randell and my dad, and the prayers and support from all of you.

Kirsten wrote about the language that surrounds cancer. There is a lot "war", "fight", and "battle" talk but the reality of wars, fights and battles are that there is a winner and a loser, and no one wants cancer to be the winner and the patient to be the looser. Seldom during the conversations of cancer will you hear the world "journey" because there is no "journey" in a fight and there is no reflection or enjoyment for a "war" or "battle". William is on a journey. I do not know the outcome, I can only pray for a good one. This is William's journey and I am here to guide him. This is William's journey physically and emotionally - all we can do is support, pray for, protect, love and mentor him.

Please pray for all the friends that are battling this disease. Ashley and Rhema are both nearing
 the end of their battles; please pray for their comfort and peace for the families. Please pray for Rory, as he continues with his battle he is also preparing for his wedding to Kristen. Please pray for Xander as he starts a new treatment, a treatment experimental to DSRCT but with positive hopes and preliminary outcomes. Please pray for the newly diagnosed, re-diagnosed and those that are misdiagnosed.... The DSRCT family is a small one, but we are mighty and we are strong!


This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our soul!



This is the gate into the garden, it says "There is no profit in

curing the body if in the process you destroy the soul"



I hate cancer.

William is currently in the hospital receiving his chemotherapy. Yesterday, day 1, he experienced severe nausea and migraines; hopefully we can pre-medicate and avoid the side effects today.

Today is a hard day for me and I ask that everyone please pray for our dear friend Rhema and her mom, Kirsten, Rhema is nearing the end of her battle with DSRCT and she desperately needs prayers for comfort, pain control and peace. When William has first diagnosed with DSRCT, Kirsten, was a huge support for me and through her I was introduced to many more DSRCT moms and warriors.  I have never met Kirsten or her beautiful daughter but I feel I have known them for a lifetime.

This is the link to Rhema's blog. http://www.caringbridge.org/visit/rhemabutler



My heart is hurting and I am at a loss for words. Please keep this family in thoughts and prayers.

Happy Memorial Day

The boys and I want to send a great big THANK YOU to all the men and women that have, are, and will fight for our great country's freedom!

We celebrated our day by appreciating our Second Amendment!
Here are a few photos, enjoy!

We live in the best country and we have the greatest freedom; It is all because of our brave men and women that fight for our rights!

Great Expectations



femoral line



 The much awaited stem cell collection process started at 3pm yesterday. The entire process took approximately 4 hours.(all of the blood in his body was filtered 4 times)  The doctors informed us that for the collection process to be considered a success, they needed to collect between 2.5 million and 10 million stem cells. .William gave us 2.6 million! As a precaution a second collection was harvested this morning for 5 hours, hopefully we are able to get atleast another 2 million!



William and I are patiently waiting on the final count from today, a good collection would mean that we get discharged tonight. However, we are both aware that a third collection may be required; after all, we only have one shot at doing the Bone Marrow Transplant so we might as well do everything we can to make sure that the BMT doctors have enough stem cells. 

Aspheresis Machine





Aspheresis Process

On thursday, William and I will be jumping on Amtrak and taking a peaceful train ride home to Sacramento where we will be spending Memorial Day weekend with Randell. Neither William or I have ever been on Amtrak, we are both super excited about the little adventure, and I am relieved to find an affordable method of transportation that does not require me driving in the chaotic LA traffic.



Stem Cells!



Aspheresis Machine

Our next round of chemotherapy (the strong stuff ) will start as soon as William's body recovers from this week's collections. I am hoping that chemo doesn't start anytime during the next 7-10 days as  my BFF Erin and 4 kids will be coming to the LA area next week. The plan is for William and I to meet up with them for a day or two of fun and memories at the  "happiest place on earth"  Disney!!!

For those of you that are interested, here are a few short vidoes that explain the stem cell rescue and bone marrow transplant process. The videos are really informative and they helped me explain everything to William so that he could better understand everything. I encourage everyone to watch at least the first two videos as they will provide you will answers to your possible questions.

Autologous Blood and Marrow Transplant at Mayo Clinic part 3: Collecting

Autologous Blood and Marrow Transplant at Mayo Clinic part 4: Conditioning

Autologous Blood and Marrow Transplant at Mayo Clinic part 5: Engravetment and Side Effects

Autologous Blood and Marrow Transplant at Mayo Clinic part 6: Coping

Times They Are A Changing

Lab work from this afternoon shows that William's numbers have doubled since last night. So guess what, they are going to start the stem cell collection in the next couple of hours !!

WooHoo!

"Peace cannot be kept by force. It can only be achieved by understanding."

I suppose that it is normal for any parent in our situation to seek guidance, knowledge and a sense of understanding, right? Right! Albert Einstein said "Peace cannot be kept by force. It can only be achieved by understanding." this weekend I found my peace by understanding the frustrating fact that I am not in control of William's treatment schedule, therefor I am not in charge of the ever changing treatment calendar that inevitably schedules and manages every aspect of our lives.

During the course of the past 100 hours William's surgery had been cancelled and reschedules multiple times, William was diagnosed with having the BK virus, we were discharged and readmitted to the hospital, drove home to El Dorado where we were able to spend the day with Randell and then finally, this morning at 8am, William had his procedure to place the femoral artery line.

William is on day 14 of his Neupogen injections and still his numbers are not yet high enough to begin the stem cell collection process. At the start of this process we were made aware of the fact that there were no gaurantees, and we knew that it would not be an easy process but, the magnitude and full understanding of the difficulties involved really only became realistically obvious to me this morning when I realized that the femoral artery line was being placed with a 50/50 chance that William's tired little bone marrow will not be able to provide us with the amount of stem cells needed - I briefly lost my composure and had a mommy moment...

William is now out of surgery and heavily medicated. He wil be returned to his room shortly where we will wait for the BMT (bone marrow transplant) Team to stop by and discuss possible backup plans with us. From what I know, there is a possibility that if the stem cell rescue process fails, they will need to collect actual bone marrow from him; however, the problem with that is the history of cancer in the actual bone marrow- I am not really sure what the back up plan is for the back up plan .

The discovery of the BK virus in the bladder provides a whole new set of treatment plans, side effects to manage, time lines to meet and risks to beware off. I just need to keep reminding myself that everything happens for a reason, and that we have already made it through so much, we can handle a few more curve balls.

I will update the blog again tomorrow, hopefully with positive news.

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

Progress

Quick update- William's surgery to place the temporary line in the groin has been scheduled for Friday morning. There is a chance that it may even be placed as early as tomorow but, if it does not get placed tomorrow (depends on surgeons schedule) then it will definitely happen for the scheduled time on Friday! I am not sure if I explained why a new line was necessary but just in case I didn't, a new line is needed because Williams current central line is only 8mm in diameter. If the team were to try to collect the cells from a line smaller than 12mm, there is a possibility that the cells would get damaged and broken-thus the reason for a new line, a 12 mm line that will be placed into the femoral artery in the groin area.
I was told that the procedure to place the line will take approximately 45 minutes.

Once the line is placed and William wakes up from surgery, William will return to his room where the ASpheresis process will begin. Please pray that the surgery will be successful, that there will be no complications, and that William's body is strong enough provide all of the stem cells needed, and that our medical team is blessed with knowledge,compassion, calmness and grace of God.

I have not been able to get my hands on the report from last Friday's bone marrow aspirations but, considering that they actually scheduled the surgery I would say that the results came back in our favor!!!

Keep on keepin' on!
Live Strong in answered prayers!

The waiting game

My apologies for the delayed update - There is a lot to catch you up on...

Yesterday, a week ago William was discharged from the hospital. The 5  days of chemotherapy went better than anticipated and his bladder had minimal bleeding (all things considered).  On Monday,William started his daily injections of Neupogen. Thanks to a lot of bribes, numbing cream and grandma's hugs, we have been successful in doing the injections with very little tears.

Besides the usual bi-weekly clinic visit and blood test, our week also consisted of a conference with the BMT (Bone Marrow Transplant) team, and a last minute double bone marrow aspiration.

On Thursday morning the three of us (me, grandma, and William) met with Dr. Wolfson and her Nurse Practitioner. SIDE NOTE -- William has met several female doctors here and he was completed surprised by the fact that girls could be doctors too.  Dr. Wolfson is the transplant doctor, and she will be taking charge of William's treatment until after the blood marrow transplant has been completed. Dr. Anderson will continue to be our Oncologist, but all orders and procedures go through Dr. Wolfson and her team.

Topics and discussion notes from the meeting with Dr. Wolfson and her NP.

1~What to expect. Side effects of the stem cell harvesting and the transplant.
-Infections -
-Veno-occlusive Disease (VOD) of the liver
-Interstitial Pneumonia Syndrome (IPS)
-Graft Failure
-Cataracts
-Mucositis
Please read click here to read article about all the above mentioned side effects.

2~How the process works.
William will be admitted for approx. 5 days during which a new double line catheter will be inserted into the groin area. Using a process and machine called Aspheresis, blood and stem cells will be collected over a 5 hour period each day for approx. 3 to 5 days.  

Once William has completed two round of High Dose Chemo, the transplant will be done via IV. We were told to anticipate isolation for approx 30 days. Also, for approximately 100 days after transplant, William will be on a bacteria free diet and germ free living environment.

3~Chemotherapy
The high dose chemotherapy that will be used is a "recipe" specific to the City of Hope. Busulfan, Melphalan, and Topotecan are all very successful chemos and because William has never received them or any similar, there will be no resistance from the tumors ;) The side effects of the chemo will be nothing new but, the management and prevention of them will done by the BMT team on a daily basis ( basically this means that William will get a lot of drugs, antibiotics, pain meds, nausea meds and  bladder/bowl management care)

4~Transplant Prep

Due to the fact that the high dose chemo and transplant can both cause serious problems, William's vital stats will be monitored closely for any abnormalities. To figure out and calculate what is "normal" for William he will be going through several pre-transplant tests.They are as follow:
-Chest X-Ray ( Check- this was done yesterday)
-EKG
-Echo cardiogram
-CT Scan
-Multi Gated Acquisition Scan
-Pulmonary Function Tests

-Bone Marrow Aspiration (Check - This was done on Friday)
-Dental Exam
-MRI

-Gallium Scan

I think that covers most of the information - I have an overflow of information going on in my head, so I apologize if I left something out.

Randell was able to visit us this weekend! We missed him so much, and being able to spend a few days with him was extremely therapeutic for both William and I.   Hopefully, if all goes well, William and I will be able to return home (to Nor. Cal) for Memorial Day Weekend.

Sometime during the weekend William accidentally bit his lip - long story short, the bite got infected (no white blood cells to fight germs) and now, we are back at City of Hope. I was extremely concerned that the infection and several antibiotics would somehow postpone the Stem Cell Rescue/Harvest/Collection process however, Dr. Anderson assured me this morning that he will push to get the procedure completed on schedule. (Yippee)

Well, that is enough writing for the day - I will try to update again tomorrow.

Keep on Keeping on! Live Strong in God's promise of permanently healing the cancer in William's body.

Happy Mother's Day!

I have a very important message from William for all of the moms, single dads, aunts, grandmas, great grandmas, sisters and cousins........

Today is day 6 of our stay here at City of Hope and I am happy to say that everything is going better than expected! Thank you for all of your prayers! Please keep them coming!

William finished his chemotherapy early yesterday, so far there has been minimal side effects. Actually, the only side effect that William has experienced thus far is a loss of appetite and ever changing emotions (from the steroids)

One of the biggest concerns we had with the new chemotherapy was bladder damage and bleeding. Ifosfamide, one of the chemo drugs he is receiving is notorious for causing extreme bladder problems, and because of William's hemorrhagic cystitis  caused by the first round of chemo in April 2010, Dr. Anderson has been monitoring William's urine, hydration, and platelet counts very closely. William has also been receiving Mesna several time a day. If William's urine analysis from this morning looks as good as it has been for the past week, we will be able to go home (to LB)

Tomorrow we will start our 10 to 14 day process of giving William daily shots of Neupogen. Click here for information. The neupogen will push the stem cells out of the bone marrow and into the blood stream so that we can collect the stem cells and "rescue" them. There is a specific window of opportunity during which the Dr. will be able to rescue the ideal and best stem cells, therefore close monitoring is required and we will be doing several visits to the hospital during the week.

As with most drugs related to treating cancer, Neupogen has some extreme side effects of which the worst is extreme bone pains and aches. The bone pain is a sign that the bone marrow is "revving" up (working overtime) to produce those much needed cells. Please pray that the pain is tolerable and that William's body is strong enough to make all of the necessary cells needed to make the stem cell rescue a success!!! Please pray that God gives Sir. William the courage, calm emotions and strength to make it thought the next 10 to 14 days of daily injections.

Along with all the other prayer requests listed, please keep Randell and my my dad in your prayers. The two men are both at home, alone, working hard to support us! It is important to remember that the journey we are on is not just one about William's treatment and healing but, it is also a journey for our entire family entailing strength, commitment, faith, love and determination!



Happy Mother's Day.



Keep on Keepin on.

Live Strong in God's miracle of healing!