Thank you to everyone that has been writing to William and sending cards.
William is really struggling with the expected side effects from chemo, the worst of which is the blisters in his throat.
Unfortunately, William has also been struggling with severely high fevers of 40+ C/ 104+f. To complicate things a little further, c-diff has once again returned and this causes tummy cramping and discomfort.
I am so thankful for this medical team. Everyone here here has been absolutely wonderful and even through the latest hours of the night, in William's worst condition, the on-call doctor has been a constant kind support to us. The nurses, social workers, volunteers, child life team, teachers, phsycologists and doctors are AMAZING and I am truly grateful to all of them for all the compassion and love that we have received!
William is spending most of his time in a narcotic induced sleep, and although I don't like seeing him like this, I know that this is the most comfortable thing for him.
This is Wiliam's journey and we will keep on keepin' on with God in our Hearts and courage in our souls
Thursday, September 29, 2011
Tuesday, September 27, 2011
Transplant
Stem Cells Arrive Taken from Cryogenic Holder Gently Defrosted
Stem Cells Prepped Patient ID checked twice Nurse starts infusion
Stem Cells are infused Feeling the side effect of the cryogenic preservatives used.
Cryogenic tech stands guard. Nurse stands guard. Vitals are taken every 6 min.
William being peaceful!
Day 0
Wow, we made it – Day 0! I cannot find the words to express how emotional I am today. My heart is filled with relieve, joy, happiness, love, faith, and perhaps most importantly – HOPE.
On Friday night William finished up with his last infusion of Busulfan and Topotecan. As you can tell by the wonderful goofy smile on William’s face in the photo, he was still coping well with the side effects. Actually, up to this point he was still eating and even managed to spend a couple of hours with the other transplant kids in the play room.
On Saturday, the dreaded Melphalan chemo was administered and even though William consumed plenty of popsicles and ice chips prior to receiving the chemo (minimizes blood flow in mouth tissue thus minimizing the blisters and sores) he was in absolute pain within a few hours of receiving this horrid chemo.
Yesterday, after the second day of receiving Melphalan, William not only struggled with the Mucositis (ulcers in mouth, digestive track and throat) but also diarrhea, constant vomiting, painful hiccups, and migraines. - - Sigh - -
Due to pain related to the act of swallowing, William is no longer eating and a IV nutrition is being given 18 hours a day. William has also been given a ‘Happy Button’ that allows him to infuse pain medicine at his leisure and need by simply pressing a little button.
To assist with pain management and decrease the Mucositis related inflammation in William’s throat, he receives 3 daily inhaler treatments of Decadron (steroids) William’s nausea levels are the worst I have ever seen, and he is currently being given Reglan, Benedryl, Merinol, Kytril, Scopolomine (patch stuck behind the ear) and a Promethazine. Unfortunately, none of these are 100% effective and William still struggles with near constant vomiting.
So, here we are on the morning of Day 0 and just a few hours away from the transplant! Just like June 22, 2002, today will forever be seen and celebrated as William’s birthday. Today, William will be given the miracle and gift of live.
Please keep us in your thoughts and prayers today!
I will update the blog again tomorrow.
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
Friday, September 23, 2011
Day -4
So far our days have been filled with tutoring, paper airplane folding, DS 3D games, WII, reading, and lots of Uno. Keeping William’s mind and body occupied has been a little more challenging than I initially anticipated but, I am sure that next week’s arrival of Grandma will alleviate some of the boredom.
Thank you for checking in on William – Please remember to keep sending William your letters and words of encouragement!
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
Sunday, September 18, 2011
Day–10 through -7 and a weekend we will never forget!
This past weekend, we were invited to Reno to attend the Air Races and also, see one of William’s favorite bands, Maroon 5, in concert.
On Friday night, we attended the Maroon 5 concert and thanks to a friend with special connections, we were able to go backstage and meet the band. William was able to hangout with the guys, exchange some jokes, get some autographs and photos. I must say, that the guys from Maroon 5 are extremely, extremely nice, humble, and down to earth!. The entire band signed a table cloth (from the table were William was sitting and chatting with them) We also had some photos taken by the band photographer (I will publish those once they are sent to me). Unfortunately, the events from the air race earlier in the day, was still occupying William’s thoughts so we did not stay for the entire concert. Instead, we decided to return to the hotel and allow William some much needed relaxation and fun in the kids arcade.
The video is from the Reno concert, if you listen carefully, you will hear Adam dedicating a song to William.
On Sunday, after a tearful goodbye to Randell and the dogs, William and I returned to LA. At 5pm we checked into the hospital and by 8pm his pre-chemo drugs were given.
I am happy to report that we are now on the 3rd day of chemotherapy and William is doing exceptionally well. In fact, he is doing so well that the doctors decided to up his chemotherapy dose and administer a stronger formula.
As we settle into our room and prepare for the next 4-6 weeks of treatment, we would like to remind everyone that William loves receiving mail! Reading everyone’s cards and letters gives William tremendous joy, so please keep sending them! Our mailing address is listed below.
For those of you that are local – Yes, you are welcome to visit BUT – you have to be absolutely healthy (no running noses or coughs), please remember to scrub down and sterilize before entering our room, and YOU MUST TEXT, OR CALL ME FIRST. Also, if you have had any kind of immunization or vaccine – PLEASE DO NOT VISIT!
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
- City of Hope – Helford Hospital
- 3rd Floor Pediatrics
- Patient: William Klopper
- 1500 East Duarte Road
Duarte, California 91010
Wednesday, September 14, 2011
…13,12,11,10,9,8,7,6,5,4,3,2,1 TRANSPLANT!
My apologies for not updating sooner. William and I are at home, enjoying some much needed ‘normality’. William’s transplant was originally supposed to happen on the 11th, but thankfully the transplant team agreed to our request to postpone the procedure by 7 days. Yes, the postponement was a good thing. On September 10th, Randell, William, and I attended the Capital Air Show, and as you can imagine William had an absolute blast! I am so happy that William was able to attend. As you already know, William is a huge fan of all WWII aircraft, so it was an absolute delight when we realized that the airshow hosted a special Pearl Harbor bombing reenactment. Seeing the Japanese Zero Bombers flying in formations, and experiencing the smells, sights, and sounds of ‘bombs’ (pyrotechnic special effects) made William an extremely happy boy with a big goofy smile.
The transplant process is scheduled to start on Sunday the 18th. Transplant day will be +10 days after William gets admitted. This is our anticipated calendar:
| 9/18 | Day -9 | Admit. Start anti seizure medication, Dilantin |
| 9/19 | Day -8 | High Dose Chemo. Busulfan for 6 hours & Topotecan continuous |
| 9/20 | Day -7 | High Dose Chemo. Busulfan for 6 hours & Topotecan continuous |
| 9/21 | Day -6 | High Dose Chemo. Busulfan for 6 hours & Topotecan continuous |
| 9/22 | Day -5 | High Dose Chemo. Busulfan for 6 hours & Topotecan continuous |
| 9/23 | Day -4 | High Dose Chemo. Busulfan for 6 hours & Topotecan continuous |
| 9/25 | Day -3 | High Dose Chemo. Melphalan |
| 9/26 | Day -2 | High Dose Chemo. Melphalan |
| 9/27 | Day -1 | Rest |
| 9/28 | Day 0 | TRANSPLANT |
| 9/29-10/1 | Day +1 through +4 | Rest |
| 10/2-10/6 | Day +5 though +10 | G-CSF injections |
| 10/11 | Day +15 | engraftment anticipated. |
There is equal excitement and anxiety in my heart about the upcoming transplant. I am extremely happy that this process is finally happening but, at the same time I am nervous about all the anticipated side effects. The side effect that has caused me the most tears, sadness and anger, is William’s infertility. It saddens me to realize that William will never be able to father a child of his own. Cancer has stolen so much from William already, why does it need to steal the future life of his children? Yes, I realize that in the grand scheme of things, William’s infertility is a small price to pay for his survival and living a cancer free live. I need to remember to focus on the positive.
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
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