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.