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These are both great kids who could use your prayers. I've mentioned them in the "I need a Stiff Drink" section of this web site and have a tremendous response from everyone wanting to know how they are doing and including them on prayer lists. Send me an email if you would like an address for Kevin, Melanie or their parents. --Brit Go to: Melanie Go to: Kevin
12/22 - Note from Melanie's Dad Hello Brit and Virginia, sorry we have not kept you updated on Melanie's treatment. She received her stem cells Oct 31 and spent Halloween night at TCH. She was released the next day after a platelet infusion. The next couple of weeks were the routine trips for blood counts and platelets or red blood cells as needed. Her blood recovered quickly and her appetite was good a few days after coming home from TCH. That was chemo session 4 of 4 and since Melanie had lost a substantial amount of hearing from previous chemo, Dr. Strother reduced the last treatment of chemo 50% to prevent even more hearing lost. We repeat our conversations a lot around the house now and much of the time Melanie is out of the loop because she can't hear. But the important part is she is here with us. She will be fitted with hearing aids in Jan. On Dec 7, I took her to TCH for the final MRI, that was on a Thursday. Friday morning we were on the phone calling Dr. Strother for the report. That afternoon he called back and explained the report. From what the radiologist could tell, the tumor no longer exist. What remains the Drs. think is scar tissue. I had a long discussion with Dr. Strother and I expressed my desire to have a PET scan performed on Melanie. TCH does not have that machine but Hermann Hospital has one. He said that the PET could possibly tell the difference between scar tissue and tumor tissue. I had promised Melanie that as soon as the treatment was over, we would take her to Disney World so she could have some fun. We left for Florida Dec. 15 and spent a week in Florida and what seems like a month's pay there. We just got back today, we all had fun and are tired but Melanie had some long deserved fun. We hope Jeri will soon be able to have a trip somewhere to have fun. Melanie has been through a lot and Jeri has been down a much harder road to beat this. We continue to pray for Jeri's success and would like to thank God and all those that have prayed for both of our girls. Thanks for the message and Merry Christmas to all the Parkers, Larry 8/20 - Note from Virginia at the BMT Melanie checked into the hospital on Saturday (yesterday). She had been at the BMT last week and was released about the same time as Jeri. Melanie developed a fever and her mom took her to the emergency room. Readers of the diary will recall the notations on 8/10 and 8/11 about Melanie having a fever while in the BMTat the same time as Jeri. The bad news is that she's not feeling well or talking to anyone. The good news is that she's not in the intensive care unit. That means that the doctors believe that they have her stabilized. 7/9 - Here's a note from Melanie's Dad Hello Brit and Virginia, I guess we failed to tell you that the neurosurgeon said now is not the time for an operation. We did not talk to him, but that was his conclusion after seeing the MRI. He told the Cancer Clinic Drs. that the risk of operating in that area of the brain was to great. I hope to see him while Melanie is at TCH to find out if he is waiting for the chemo to shrink the tumor more and then operate or if the chemo will destroy the rest of the tumor. Dr. Stother is Melanie's oncologist and he has been on vacation since June 24. I hope he is back tomorrow since Melanie is at TCH in the BMT unit and will start the chemotherapy Monday. The Drs. plan is to reinfuse the stem cells Friday. And if she can eat and drink on Sat., she will come home to recover with a couple of trips to the Clinic the first week. Jeri's website has prepared all of us for this segment of Melanie's treatment. Since Melanie knows what to expect, she went into the BMT unit skipping down the halls and excited to be there. She really wants to get this thing over with so she can get on with life. I know Jeri probably feels the same way. Talk to you later, Larry 6/24 - Here's a note from Melanie's Dad Hello Brit, Michelle and I read Jeri's update daily and are really happy about her progress. She is a strong young lady, mentally and physically. Melanie had an MRI done Thursday June 22 at TCH. Friday morning I was on the phone calling both the Cancer Clinic and the radiation dept. at Methodist Hospital to find out the results. Friday afternoon Dr. Huey, a resident from radiation called, he said the report was that the tumor was over 80% smaller than it was on an April 9 MRI and had responded well to the radiation therapy. Later Dr. Strother from the clinic called and said the same thing. He told us to call the neurosurgeons on Monday and that they will probably want to operate to remove the rest of the tumor. Two weeks after surgery, Dr Strother will begin the chemo. Before Melanie started the radiation she had the stem cell harvesting. Dr. Strother said he would infuse the cells after each session of chemo. He said that she will have 4 sessions of high dose chemotherapy with 3 weeks off between treatments. So for now it looks like we will be at TCH until October. Yesterday was a fairly bad day for Melanie, not about the results of the MRI but about school. For the second time since all this started, she was crying and said that this cancer was taking over her life. Last month we talked with her teachers and decided to have her repeat the 4th grade since she missed school from February on. Yesterday she asked about school so we broke the news to her about repeating 4th grade and she didn't take it well. But with her therapy schedule, she will miss more school next year and would have a hard time keeping up. We will keep Jeri in our prayers and I will let you know when Melanie is scheduled for surgery. Larry 5/28 - Here's a note from the Ellis family. (Melanie's mom, Michelle, has the same birthday as Jeri.) Hi Brit, thanks for the B-day greetings. Our day was pretty good. Melanie saw her doctor yesterday, he told her to get some sun, go swimming and come back in 4 weeks for an MRI. He seems confident that the Cat scan shows no tumor, but we will not know for sure till the MRI. Melanie is feeling pretty good, we are in the process of weaning her off of the steroids this week, a few headaches but not much else. .......ed. note - personal stuff removed.......... You guys kick back and get some much needed rest in your own beds. Talk to you guys soon! Much Love, Michelle & Larry 5/18 - Melanie's dad, Larry Ellis came by to wish Jeri luck and bring an interesting looking stuffed monkey. He mentioned that Melanie was nearly through the radiation treatment phase and that it appears that the tumor has disappeared. What makes that significant is that the doctors didn't think that would happen given the type of tumor that was lodged in her brain. Larry said that they will have to revisit the pathology to see if the correct cell type diagnosis had been made. At least that was his early indication. In any event, it looks like a bit of good news that the Ellis family can surely use. Larry said he would send me an update to post on the results of the review and plans for further treatment. 5/5 - Here's a note from Melanie's dad. Hello to all asking about Melanie's radiation therapy, First let me say that Melanie is doing great, every day she is feeling better and this week May 9, the Drs. at TCH said they could see improvement of her neuro responses. I am hoping that means the tumor is shrinking. Her next step is called the Peacock System of radiation treatment. Below are a couple of links that can explain the process alot better than I could. Thanks again for all the support and Prayers, Larry http://www.nomos.com/fwhat.html http://www.methodisthealth.com/radiotherapy/tech.htm 5/1 - Here's a note from Melanie's dad. Hello Brit, Thanks for the note and asking about Melanie. She is doing really well so far with the radiation therapy. Today is the 12th treatment of 30. Her only problem is not sleeping enough and the constant hunger from the steroids. (personal stuff edited out) Thanks Larry 4/19 - Melanie is currently undergoing radiation treatment 5 days a week. Things have not gone as well as we all would have liked. She's hanging in there from what I here but could sure use everyone's prayers. I'll try to get more information for everyone at the next opportunity. 4/21/2001 - We lost Kevin Kyles early Wednesday morning. He had been getting progressively worse over the past few months. I've been told that it was unexpected. Kevin had been living life day to day in the most positive way. He has been an inspiration as has his family. There is nothing we can do or say to relive the family's loss so we'll just say a prayer for Kevin to be in a place where the disease is a distant memory. Regular readers will remember that Kevin was fighting Osteosarcoma and his diagnosis was a couple of months ahead of Jeri. Kevin's family lost him last Wednesday evening. Please join us in saying a prayer for Kevin and his family during this difficult time. The services were today. a memorial has been established and those who wish to make a contribution in Kevin's memory may do so to the Tulsa chapter of the Make-A-Wish Foundation, 2825 E. Skelly Drive, Suite 824, Tulsa, OK 74105. Kevin's wish was for him and his family to make a trip to Hawaii. I believe that he had completed his wish earlier this year. Here is a link to additional information about Kevin.
1/12/2001 - Here's an excerpt from a note that Virginia received from Kevin's mom. "........Kevin and Jeri are on very similar chemo schedules. After a bumpy chemo treatment in December (and a couple visits back to the hospital with fevers, blood transfusions, and trouble breathing), we are being provided with guarded, but hopeful news from the latest ct scans after Kevin's VP16/Ifosfamide treatments which ended this past Wednesday evening. It appears, as Kevin's oncologists put it, " we are kicking some cancer butt". The sessions are definitely taking the oomph out of Kevin's sails with the increased dosages of VP16/Ifosfamide; but, tumors on the right lung are totally gone and the advancement of the many tumors surrounding Kevin's left lung have been halted. He is totally off oxygen after this last treatment, he has reduced the amount of pain medications he has been taking, and the doctors are hearing breathing noises once again in the left lung. Thank you, thank you for sharing Jeri's results, which provided us with the knowledge and courage to once again explore VP16/Ifosfamide to treat this aggressive cancer. As Brit so aptly phrased it, it appears we have some of the cancer cells in retreat and have at least temporarily stopped the advancement. While this may only be a small victory in one of many battles, we remain confident we will win the war... Had to share with someone who understands the joy of even the slightest improvement; and, once again thank you for your informative web page. Give Jeri a hug, and I look forward to reading of her even more promising CT-scan results in the next week or so..... Linda Kyles
12/18/2000 - Here's an excerpt from a note that Virginia received from Kevin's mom. ".............Yes, you are right, Kevin would have been thrilled to attend such a dinner and get to meet everyone. He settled on his Make-A-Wish trip for the Pro Bowl Football game in Hawaii. He was soooo in hopes we might be staying at the same hotel as some of the players. I saw that Jeri has put in a wish,,,, are you at liberty yet to say what it is? I assume it has something to do with dance <smile>.. I am rather reluctant to continue with this note; however, I attribute our current efforts to Jeri's progress and the informative web page entries you, Brit, and Randy make. (See, I do read them <smile>)... As you may, or may not have heard, we were informed almost two weeks ago that Kevin is being declared "uncurable". After his surgery at the first of October 2000, (it's awful when you have to differentiate which surgery).. he was put on a regimen of Oxytocin and Topeteekan (like Jeri had been on)... After the last treatment, right before Thanksgiving, we all caught a nasty cold (Kevin included). Kevin began to complain about pain in his left lung and problems breathing. Virg, we actually watched the tumors grow over a period of a week and a half in the chest x-rays from 1/3 full to totally full. The doctors talked about aspirating the lung, but wanted to make sure there were no new tumors since the lung was full of fluid and no air was moving. The doctors explained it is hard to differentiate tumor from fluid on x-rays. The resulting ct scan showed "numerous large tumors encasing the left lung and starting in the right lung". While the doctor was encouraging us to stop treatment, or move to experimental, I thought of Jeri's progress with the VP16 and Ifosomide. I discussed it with the doctor, and referred him to your site. Kevin took VP16 and Ifosomide before and after the surgery on his main tumor (the arm). When I asked the doctor what he would do if this were his child - he agreed he would try the VP16/Ifosomide. Kevin finished his first round yesterday (Sunday) - we had one episode where his blood pressure dropped to 79/45; but, it was during the last 15 minutes of the last treatment - the nurses decided since he was responsive, that he would be ok. This was a rough treatment for him (due to increased dosages); but, he told his oncology nurse he was not quitting and would beat this thing. He, like all the other "cancer kids", is so amazing in his attitude and strength. We will know in a couple weeks whether the treatments are helping. I thank you from the bottom of my heart for sharing Jeri with us. I keep telling myself this is only a stumbling block, a set back, and one that we will get past. Kevin and Jeri are remarkable kids, and I feel blessed to know them. They are my heroes, and express the kind of character traits I can only hope to emulate. God Bless and keep us posted on Jeri's progress............................."
5/23/2000 - Here's a note I received from Kevin's mom along with a couple of pictures. I've heard Jeri's surgery is behind all of you. Finally, got a chance to read the web page updates. I cried, but was relieved she has done as well as she has. I think having to "straighten" out hospital staffs must be intentional after major surgeries, like some kind of diversion, for we parents <Smile>.. Sounds like you handled it very well.. Not much I can say other than you "must" believe Jeri's going to do fine - like you said to me, Brit, no other option is acceptable. She is such a wonderful young lady; and you both have every right to be sooo proud of how she has turned out. Like the speaker at commencement said last Friday.. "Personality is who you are when you are around people, character is who you are when you are alone." This young lady definitely expresses alot of character! Just had to let you know you are in our thoughts and prayers every day - and, many people in B'ville ask about Jeri's progress daily. p.s. Since I'm at home and writing this - I'm taking the liberty to attach a couple pics of Kevin. The one with his hat was taken in November at the bad allergic-type reaction to methotrexate and three weeks in the hospital. The little guy on his lap is E.J. (Eric Jordan), our three year old grandson; who shaved his head with his uncle that day, 'cause he thinks Uncle Kevin is a pretty neat person. The pic in his tux, was taken this past April - a month after his cancer surgery and two weeks after his emergency appendectomy. The girl with him, naturally, is his girlfriend, Kristal. She has been his angel helping him get through all the rough spots and always makes everyone around her smile. He begins his next to the last chemo round this Thursday. With less bone marrow it is taking longer to recover between sessions; while he is once again bald, he is feeling well. Like Jeri, he feels good now and dreads being in the hospital over the holiday weekend; but, he knows it's almost behind him. (FYI,, his tumor kill was 75%) - we are rooting for you that Jeri's is equal, or better, to his... Remember stats are averages - I prefer to believe our two children are in the upper (good) range of that bell-curve average. I feel everything is going to go well for her and you.. You've almost reached the summit of that mountain she is climbing, the other side of the journey from the summit is much easier I assure you.. Hugs.... Linda Kyles
Click on pictures to get a larger version4/19/2000 - Here's the text of a note I received today from Kevin's mom.
I think of Jeri everyday... you must have a little ESP as I was thinking really hard about her yesterday as I saw Virginia's last note to me in my note log... I hope Jeri is doing fine - I'm still trying to contact the lady with the t-shirts so I can get one to Jeri.. I hope Jeri's Methotrexate wasn't too bad - that's the drug that Kevin couldn't tolerate and caused many delays in the cancer surgery... Do you have a surgery date yet? Anyway, to answer your question - he is doing GREAT! He and his girlfriend attended their Prom a couple weekends ago., He had his hair, along with a goatee and mustache for the Prom <smile>.. He just finished the first of his last four rounds of chemo last week. Assuming no infections or other setbacks, he should have his last round of chemo two weeks before his 18th birthday (June 29). He is looking forward to that and having his port removed, then he will know it is over! We went to Omaha the last of March and received the pathology report and a shoulder brace which helps raise his shoulder back into the correct position. The tumor had caused his shoulder to drop drastically; the brace works on a traction concept and pushes the shoulder back into position. The doctor doesn't want him to move his shoulder for at least three months, so we won't know until then how much rotation he will have. In the meantime, he can move his forearm around a little (as much as the brace will allow), he gets the shoulder x-rayed monthly to be sure the rod and marlex in his shoulder joint isn't slipping out of place, and we return to Omaha the last of June for another check. Last week we got an interpretation of the pathology report, which indicated a 75% tumor kill and all margins (areas on outer borders of the tumor) were clear of malignancy. Our oncologists advised they were a little concerned we didn't get a better "kill rate", but were pleased the "margins" were clear of cancer. They indicated they will just monitor Kevin closely for a least the next year with continued blood tests and CAT scans every three months to hopefully catch it sooner, should it come back. I think, though, with any cancer there is always that concern it will return; and, we have a "good" feeling about so many things, and feel God has already had a hand in all of this since the "suspicious" spots on his lungs, liver, and other arm "disappeared" even before chemo started - so, we refuse to worry too much about it. There are no guarantees in life, and Kevin has had the unique opportunity to no longer take things for granted; but, rather appreciate every day he's given and live it to its fullest. Kevin also shared with me last night that he is planning to speak at the upcoming graduation ceremony for his school and thank everyone for the support and prayers they have extended during this past school year. I hope he will go through with it. ........... (next text omitted, it was personal) Linda Kyles
Brit: brit@stickyshoe.com Virg: virg@stickyshoe.com This page last updated: June 13, 2006 |
