Tuesday, June 3, 2003
Prayer to St. Peregrine
(Patron Saint for the Cancer Afflicted)
O great Peregrine,
I don't know if praying to the Saints is just a Catholic thing or if other religions also pray to the Saints, but the above prayer hangs on my wall at Ronald - thanks to some sweet person sending it to me - and I thought I would share it with all of Christi's Spirit Club members. I know how hard you are praying for our little girl. Thank you!
In my last entry, I wrote about how many folks have contacted me telling me how Christi and her situation has changed how they go about their life and work. Today, we received this email which brought Shayne and I to our knees. I won't mention this sweet "stranger's" name, but I will ask that you keep her in your prayers as she deals with this horrible devastation. Tomorrow, after Christi is in a safe spot with a volunteer I trust, I will dash out to a church nearby to pray and light a candle for this young woman. Anyway, here's what she emailed us today:
Dear Angela and Shayne-
At Aunt Vaunie's suggestion, I started rubbing natural vitamin E on Christi's scars this week. At this point in Christi's life she doesn't mind her scars, perhaps thinking of them as "badges of courage" or something but I know when she's older she will not appreciate them. Aunt V told us this should help. The scar on her back is about 4-5 inches long. Back in September, they were unable to do a simple biopsy; therefore, she actually went through a surgery where her ribs had to be separated to get many pieces of her tumor out for analysis. While disappointed that this had to happen, perhaps now we know the reason.
Shayne and I have been researching and discussing a vaccine that's available at another institution which we may pursue when (if) her disease gets down to an MRD (Minimal Residual Disease) or NED (No Evidence of Disease) status. Using cells taken from Christi tumor, they would actually create a vaccine to help her body fight off her particular type of NB cells in the future. We're still gathering information and of course it is another experiment study and not proven, but it appears that there are no side effects and we believe because her case is so bad she would qualify for it.
We're waiting to hear back from Columbus to see if pieces of her tumor are still frozen somewhere that could be sent to this hospital in Texas to create a vaccine just for her. So perhaps now we know the reason why a surgery had to be done instead of just a biopsy back in September. Hmmmmmm. God does work in mysterious ways. Praise Him!!
Another item Shayne has been gathering information on is a proton beam radiation done in California. We were very happy to be here for her radiation since so many parents bring their children here for what is known to be the "most effective and least damaging radiation for pediatrics". EPCOT even features one of MSKCC's radiologist doing this unique way radiation is done here which doesn't cause as much harm. The radiation done in one location in California we are looking into is proton radiation. The location of Christi's tumor (around her heart and along her spine) may make protons the best option for her treatment. Protons can be controlled so that no radiation "scatters" or travels through tissue beyond the treatment field. The nature of protons allows them to be "programmed." Protons enter the body at a lower energy that photons (conventional radiation) and gain energy as they travel, once at the target area, they discharge all of their energy there and do not scatter or continue to travel beyond the target area. Photons enter the body at a higher energy and lose energy as they travel, once they reach the target area, they continue to travel beyond the target and may scatter to other tissue as well. Pretty interesting, eh?!
We're also going to discuss the interoparative radiation (done at the same time as her surgery to again lessen damage done to outlying tissue) once we get surgery scheduled here and see if that may be the best way to go. We read a really optimistic article about a study done with this type of interoparative radiation too. Regardless, Christi's tumor site is going to have to be radiated. We're thankful that should be the only radiation she needs - at this time. I'm not foolish enough to believe that new tumor spots won't show up at some point in time. We're just hoping and praying to get to the point where she can have surgery and radiation. This continues to be a long, uphill battle with no end in sight.
While I was ready to give up on the integrated medicine approach, Dr. Pat has really hit it off with Christi and she worked with Christi during each day's treatment last week and this. The lady is absolutely amazing! (And she did her undergraduate work in Ohio so she has to be all right! hee hee!) Anyway, she talks to Christi for nearly an hour keeping her calm and distracted from what's going on inside her body. The pain is still absolutely horrendous, but I am finding that we are able to use less narcotics than we were previously using. This helps all of us feel better in the evening because Christi is more comfortable. Thanks for not giving up on us, Dr. Pat! You're a gem!!!
Last night Christi was feeling well and she went to see "Finding Nemo". We all thought it was FIN-tastic! I'm sure someday someone will look back at this terribly painful monoclonal antibody treatment and compare it to using leeches to bleed out the bad in the body. Perhaps cancer will one day be cured by taking a simple pill instead of having to be subjected to this torture.
Christi enjoyed attending Shayla's "art class" at the Met on Thursday afternoon. It is an incredible place. I'm so glad it's a quick 30 minute walk away. We also learned that it is open on Friday nights so off we went on a Spynix Hunt following a guide we picked up at the info desk. What fun! Friday's news was full of set backs so it was a nice way to take some of the tension off of the day. It's like the masterpieces at the art museum can withstand the test of time while we are wondering if we can. Here is the email I sent out to my close friends and family to inform them of the set backs on Friday night: Email Subject: One Step Forward, Two Steps Back! (update from Angela)
We do not know if this is an indication that her disease has taken off (progressed) or if it's a sampling error - in that last month's she still was positive, but perhaps the small sample just didn't show it. What was the hardest to take was that he was not very encouraging at all. Going back and looking over the bone marrow aspiration reports, Shayne was correct when he immediately pointed it out to me upon first reading the reports: in two of the smears the quality was "poor" and in the other two samples, the quality was listed as "fair". We've typically had "good" quality of aspiration smears before. It's hard to find positive cells, if you don't have good smears; therefore, we now really, really question if three out of four aspirations are indeed NED. It's highly doubtful. (Because she's now had nine bone marrow tests it's getting hard and harder to get good samples. It's like it's all mush is how it was explained to us.)
While we hoped to avoid MiBG (internal radiation - actually making her radioactive trying to kill the NB that way / not being able to touch her for the week, chance of giving her a second malignant cancer, etc., etc.) therapy in Philadelphia, it seems that it will probably be a reality before long. It's truly our last card to play. There is no guarantee that it will work on her cells, it's experimental and it is palliative care. Thanks again for all of your help in getting us through this difficult time. I didn't mean for this to get you down (Well, except on your knees to pray her healing - smile!) but I knew you'd want to know the bad news as well as the good news I told you earlier this week about Christi's journey.
This roller coaster ride is unbelievable!! Here's wishing you and yours a great weekend! Tomorrow morning the Moms of the house are being taken by Ronald to Central Park. The owner of "The Boat House" is having a Mother's Day breakfast for the Moms. The staff has told us it is wonderful. When I return, we will get the van out of parking (God bless, Rick!!) and drive to Long Island. Last summer, before Christi was diagnosed, I received a very generous gift of two free hotel night gift certificates. At that time I thought that sometime during the year we would drive to Chicago and explore the great museums with the girls on a weekend. Obviously, Christi was diagnosed and therefore that never happened, but the gift certificates expire soon so off to Long Island we'll go. Yipee!! We shall return to the city on Sunday. A few hours after antibody treatment, Christi now is pain free and happy. Tonight we enjoyed the Met Museum of Art. Christi sketched in the galleries and the music was absolutely lovely! We just got in and I wanted to send this to you before I was too tired. Thanks, you guys!! Goodnight!
Our overnight trip to Long Island was wonderful. We enjoyed playing for hours at the Long Island Children's Museum. We drove out to the Hamptons and then spent the night in Commack. On Sunday we drove up to the Gold Coast. (Remember The Great Gatsby?! I used that novel when I taught an English Lit course for Tiffin University so I was happy to see that area. Lovely!!) Touring William Vanderbuilt II's mansion and seeing the $2.00 planetarium show was a highlight. Tonight Shayla was drawing and said to me, "Look at the Milky Wave." (smile) so I think she's learning a bit about astronomy too.
Shayla is really enjoying her preschool and I think she's learning so much. She can now write her name and has blossomed. I think when she's at school she is finally "Shayla" and not "Christi's Sister". She has her own place and her own sense of belonging there. I'm so glad we don't have to drag her to the hospital with us every day of the week. And it's a good thing it's worked out so well since to send her for three mornings a week costs half of our family income. (I guess that could prove how low our family income now is, or how high the cost of preschool on the Upper East Side of NYC is.) Nevertheless, I feel it's vital that she is there and I appreciate her fabulous teachers and director and all of their hard work. Her class is a most beautiful, diverse group.
Last Friday they had a pizza party because one of the students is going back to live in China. Not something she experiences at home. It's been very hard to sleep since receiving that bad news after being so hopeful for about 48 hours. Ugh! I hate this nasty beast!! Monday was back to the painful treatments for Christi. And for Shayne and I Monday's meeting with Christi's oncologist was long, full of discussion and most sobering. I felt I was really brave, up until he described how she would most likely die of this disease, then I felt myself tear up. They use a team approach here. We appreciate all four oncologist's opinions. They meet weekly to discuss all of these NB kids. It still amazes us that with NB being so rare, there are four, full time oncologists dealing only with neuroblastoma here. You'd think it was a very common and widespread disease not this rare cancer that indeed neuroblastoma is.
This week I met another neuroblastoma family here with their nine year old son from Ohio. (I noticed a Kent State University Cheerleading shirt on the Dad and of course the cheerleader in me couldn't keep quiet; I had to find out about that one!) It turns out Dad works at Kent and the cheerleaders had a fundraiser for their family. How awesome!! We wish them the best in kicking this beast! He's been fighting it for three years now. We will continue on with Christi's treatments and we will continue every day reading, researching and asking lots of questions.
I think too many battling this monster, just trust their oncologist and don't educate themselves. When their kid relapses, they're shocked. Like in almost everything - knowledge is power and in this case giving us great ammunition to help fight in this war. This is exhausting! Oh, perhaps we should turn to burying our heads in the sand; ignorance is bliss I hear. (smile) I remember scraping dishes in the basement of the Founders Cafeteria when I was a student at BGSU and thinking that once I had my education, no one could ever take it from me. I still believe, perhaps even stronger than I did back then, that education is the key. Thanks sooooooooooooooo much for EVERYTHING! You're keeping us going!! We love you all! God bless!
With warm thanks and gratitude,
What's Next? She'll finish this week out with her 3F8/beta glucan treatment. We will drive home on Friday. On Saturday she will attend the recital of her ballet group (Dance Unlimited) at the Ritz. Boy that one is going to be extremely hard on me, but she told me she really wants to go - so we will. They do not see the need to scan her in between her next cycle - unless she has pain and shows signs of progression so we will be home for almost two weeks.
She LOVES Cedar Point and is thrilled to learn (after asking all year) that she is finally tall enough to ride the "fast horses" at CP. (They know about Cedar Point here thanks to Christi!) And thanks to my teacher friend, Diane, from Bellevue we will be going to Cedar Point as well as Soak City compliments of Diane and Cedar Point. (Unbelievable kindness!!) Christi's also been wanting to stay overnight at Grandma Nee Nee's condo at the lake so I believe we'll spend a few days with her as well.
It's one of our favorite things to do in the summer and we're so glad she is always inviting us up. We will return to NYC to do her fourth AND FINAL round of these two week 3F8/beta glucan treatments beginning June 22nd. THEN we will scan and see where she is at. (About July 6th ish) Unfortunately, they do not believe that she will have enough disease gone that she will qualify for the Phase II GM / 3F8s next like we were (and still are!!) hoping and praying for. More than likely, she will next have to go to CHOP (Children's Hospital of Philadelphia) to do the MiBG treatment. Scary to think that because she will be radioactive emitting radiation, that she will not be able to go to ICU if needed there, that her clothes and toys and anything she touches will need to be thrown away and that we won't be able to touch her for days as she'll be in a cell-like hospital room. But at this point, it appears it is now our only hope. While the long term effects of MiBG therapy are simply not known (because it's so new) we feel we will have no other choice.
Unfortunately, I've known of many kids who have had this treatment and only two of them have been cleansed of their NB this way. It has not helped any other kid that I am aware of. (We're gathering studies on this, talking with parents and researching this topic heavy now.) Dr. Kushner said she had a "good" chance of having this work for her. He mentioned the fact that she's yet to have had any radiation (Radiation - from the outside - won't work to kill disease in the bone marrow.) and that was in her favor.
The surgery question is also waiting in the wings. Shayne and I are hoping to have this tumor removed around July 10th ish, but Dr. Kushner is leaning more until after her MiBG therapy in Philly saying he "didn't want to open up her chest". We know there is great risk, but we also know in order to be cured, it must be removed sometime. We know that the MiBG treatment will destroy her bone marrow and therefore she will be platelet and blood transfusion dependent as well as experience nutrapenia for a very long time. We wonder how long until her platelets would be high enough for her to even qualify for surgery after MiBG and prefer it be done before going to Philly. We continue to ask God to guide us and our oncologists during this uncertain time.
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Shayne & Angela Thomas: firstname.lastname@example.org