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

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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



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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.

Making Memories

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

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

Scan Update

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

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

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

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

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

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

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

Step 5. 5 Days of Chemo

Step 6. 21 days of recovery

Step 7. BONE MARROW TRANSPLANT!

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

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

Keep on Keeping on.

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

 

Overdue Update

HAPPY EASTER!

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

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

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

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

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

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

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

Presents in April

we are home

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

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

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

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