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!

City of Hope Tour

William's video and photos of City of Hope.

Parent Kitchen

Parent Kitchen

View

  

View

Grandma drawing on William during a clinic visit

Dr. Anderson drawing on William during a clinic visit

William's new drawings.....

Family room - fooseball table and piano

Family room - Ms. Packman game and TV

Outside of Family room

Sanitation area outside of William's room



Nursing stations- each room/patient has it's own RN station



View





William during Group Time in the play room



Hallway



Sunshine, Heat and Chemotherapy.

Finally, after a lot of anxiety, prayers, tears and scheduling nightmares, William was admitted into the City of Hope yesterday.   William was scheduled to start his chemotherapy last night however, all of the fun we had over the weekend left him a little dehydrated so we spent the night hydrating him and started chemotherapy this morning.

There is so much to tell you about the City of Hope... Where do I begin?  I am so exhausted that I don't think I actually have the energy to write about the facility - I will ask my mom to write a more details entry tomorrow and to include details about the hospital and staff.

I have received a lot of emails and calls asking questions about the upcoming Stem Cell Rescue and the Bone Marrow Transplant. (BMT) The following is an explanation of both....


Medical Talk 101 -as with most things related to cancer, momcologists get most of the information from each other; therefore, the following information is all from another Momcologists blogs. Her son recently went through stem cell rescue and a successfully bone marrow transplant.

WHY IS A BONE MARROW TRANSPLANT NEEDED?
A transplant will be needed because the very intense chemo in this phase of treatment will destroy his bone marrow and hopefully any residual cancer that the chemo did not get.


HOW ARE STEM CELLS RESCUED AND HARVESTED?
After William has completed this round of chemotherapy, he will get daily Neupogen injections to push his stem cells out of his bone marrow and into his blood so they can be collected.


Once William's body is ready give us what we need, a double catheter will be put into a large vein in his groin, and blood will be taken out and the various components of the blood will be separated by density in a centrifuge. The stem cells will be taken and frozen for use in the transplant and the rest of the blood will be put back in through the catheter. The procedure is done under local anesthesia and should take 4-5 hours. Most of the time they're able to get enough stem cells the first day, but it is possible he'll need to have more cells collected during a second round. PLEASE Pray that we only need to do this once!!!


BONE MARROW TRANSPLANT, HOW IT WORKS:
Once William is done with his high dose chemotherapy, his bone marrow willl be non existent.  Basically, if you were to look inside the bones, they would be empty (picture a dead sea sponge),all of the marrow substance is gone, dead.  At this time the stem cells that were harvested are now transplanted back into the body and find their way back to the marrow space to engraft into the bone and start reproducing themselves and eventually produce daughter cells (the white and red blood cells, platelets, etc.). Oh, and the stem cells are specifically bone marrow stem cells and they have receptors so when the blood passes through the bone marrow space, the specific stem cells know to attach to the bone while the rest of the blood cells and particles continue right on through. Isn't that amazing?

WHAT IS ENGRAFTMENT?

It means the stem cells found their way back to the marrow space, attached themselves to the bone and replicated themselves enough to fill the space and then start to produce the daughter cells (white and red blood cells, platelets). Think of it like a factory (the bone marrow space). You have to spend time hiring employees (stem cells) to fill the factory. When you have enough employees you can start production on your product list (white and red blood cells, platelets). Over time, the employees become stronger and more efficient and can more easily negotiate production malfunctions (need for transfusions, infections).



Please pray that William's body is strong enough to give us enough Stem Cells! Please pray that one one harvest procedure is necessary! Please pray that God continues to heal my little boy's body.. Please pray for all of the other DSRCT patients!

Keep on Keepin on.
Live Strong in God's promise to answer our prayers.

Fun, Fun, Fun!

Our day started with some WWII airplanes that were on display in Long Beach, and ended with big smiles after spending an exhausting 5 hours at Knotts Berry Farm.
I am so grateful that my son is able to enjoy all of the fun things that we experienced today!

Keep on Keepin on.

Live Strong in God's love and healing.