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Friday, May 4, 2007 11:26 AM CDT
Hi, everyone!
I really didn't realize how long it had been since an update. After Davis' liver issues in February, we just needed to step back for a while and breath. Unfortunately, it all came rushing back last week as we got the devastating news about our good friend, Andrew, who just relapsed a 2nd time of medulloblastoma. We are heartbroken and saddenen beyond words.
We have been extremely busy the past few months. With both Will and Davis playing ball, baseball has consumed our days (and some nights), but it has been so much fun. Davis has done great playing ball and has had a great time. That's all we really wanted was for him to have a positive, fun experience which he has. We credit a lot of that to his coaches who are so patient and positive with the kids. What a blessing they have been! Davis also finally lost his bottom two teeth. He looks so cute toothless!
We are looking forward to a great summer. Not too many big plans, but just hoping and praying for a lot of fun and good health.
Please remember the Long Family in your prayers.
Sheri
Tuesday, February 27, 2007 6:36 PM CST
Hi, everyone,
We are finally home from the hospital and are physically and mentally exhausted. I do not have the mental capacity to write an extended update right now, but just wanted to share our miraculous news with everyone. Davis' liver biopsy was negative for neuroblastoma! This is nothing short of a miracle and there is absolutely no explanation other than it is just simply answered prayers.
Davis is very sore and uncomfortable, but hopefully he will start to feel better in a day or two. He probably will not go back to school until next Monday.
The tumor they removed from his liver had every characteristic of a malignant tumor, but it was inexplicably benign. The advanced CT he had last week actually detected 14 of these tumors in his liver. We were told to expect the worst, but Davis would have no part of that. So once again, Davis left all of his doctors shaking their heads in disbelief. That's okay with us and I know it's okay with them, too!
God answers prayers -- that was evident today.
Sheri
Sunday, February 18, 2007 7:39 PM CST
Hi, everyone,
I guess things had been going too smoothly over the last few months, so it was time for something to happen. A few weeks ago Davis' leg started causing him a great deal of pain again. After that went on for a week or so, we called his doctors. They scheduled a bone scan and CT along with labs and urines. His bone scan was normal so once again there is no explanation for his leg pain other than the large plate and screws on his bone. I guess if he had some complaints of pain on a regular basis, these episodes wouldn't worry us so much. But these episodes of leg pain come on very quickly and are very severe. We are just thankful that there continues to be no other explanation for his leg pain other than the plate.
Then there is the CT. Three spots were seen on his liver on the CT scan. A MIBG scan was scheduled, but we had to wait a week to get the isotope ordered and get him injected. You have to wait 24 hours after the injection before the scan. The official word is that the MIBG was normal. I would like to say that we are completely satisfied that these spots are nothing, but there is always that lingering worry. One thing I've learned about neuroblastoma in the past two years is that it's devious. It never acts as expected and just because it acted one way in one patient, doesn't mean it will repeat itself in another. You never know what this disease will do. We have been told that these spots may be hemangiomas on his liver. We have also been told by medical professionals other than Davis' oncologists and also through some independent research of our own that hemangiomas usually appear singularly and it is unusual for there to be three of them. But as we all remember so well, we were also initially told that the lesion in Davis arm was disease because there really wasn't any other explanation. While we didn't get a really good explanation for it, we found out that it actually could be something else. Then we repeated this scenario with Davis' leg. So we do always have that belief that it actually can be something else. Something else we've learned about Davis is that he does march to the beat of his own drum.
We were not able to talk to Davis' doctor following the MIBG last Wednesday, so we are not sure what the next step will be. I understand there are a few tests that can be done to either rule out or confirm that these are hemangiomas. I hope we will know more next week. So please say a prayer for Davis that this, once again, is just some anomaly which seems to be becoming a regular occurrence in Davis.
As always, thanks for checking on Davis.
Sheri
Monday, January 22, 2007 2:00 PM CST
Hi everyone,
Things have been going so well that I've forgotten to update! That's a good thing, right? We have started a new year and what I feel is a new phase in our lives. I have such a peace about Davis right now ... I can't really explain it. I have someone ask me daily about Davis and how he is doing. As I told someone last week, he is better than he's been since before he was diagnosed. Our family is so strong and happy right now and things really couldn't be better.
Christmas was wonderful. There were no "wow" presents this year, but the kids were all so excited and grateful for what Santa brought them. Macy's birthday is January 30 and then we will have a few months before we have to start thinking about Davis' birthday.
I have registered Davis to play baseball! He was insistent that he wanted to play so we requested that he be allowed to play down a year in order to still play t-ball. There was no way we were going to throw him into baseball with machine pitch. I am nervous about him playing because I know he is so far behind even the younger players. Once again, I just need to let go and let him enjoy himself. Of course Will is playing baseball again ... he's been playing since he was four. He is also playing basketball right now. He's never played organized basketball before, so he is pretty much clueless. He thinks that running up and down the court waving his hands is all he is supposed to do. It's pretty entertaining and he's got to learn somehow, right?
As always, thanks for checking on us.
Sheri
Thursday, December 21, 2006 10:09 PM CST
Davis is so excited about Christmas. Other than a little case of strep throat and walking pneumonia last week, he continues to do well. He doesn't let anything keep him down for long.
To everyone who continues to check on Davis and care about his progress, thank you! We are truly grateful to be blessed with loving friends and family.
Wishing everyone a wonderful, blessed Christmas!
Sheri
Monday, December 11, 2006 11:12 AM CST
Hi, all,
We have been extremely busy trying to get ready for Christmas. This time of the year is so hectic -- like it's not for everyone! On top of getting ready for Christmas, we have Will's birthday on the 10th and Michael's birthday on the 18th just to keep things busier than normal. Also, this time of the year has become such a hard time of the year for me. I've been almost paralyzed in some sense. I know that most of you can't understand this, but all I can think about is what if he's not with us next year. What if this is our last Christmas all together. Is it going to be special enough? Will I regret that we did not buy him the Playstation 6000 or whatever it is? I can't quite verbalize these feelings, but they are there and they are weighing heavy on my heart. I've been very emotional and sentimental lately and even the slightest thing can bring me to a teary wreck. Not good. I am so very mindful of those lost throughout the past year. Those families are facing exactly what I'm so afraid of and my heart breaks for them. We will make it through and I know that to Davis, Christmas is as special as ever -- whether he gets the Playstation 6000 or not ...
Otherwise, things have been good with Davis. His pain seems to have subsided some and he hasn't had near as many complaints lately. He will scan again in April and hopefully not before.
Wishing everyone a very joyous and blessed Christmas!
Sheri
Tuesday, November 7, 2006 8:52 AM CST
Hi everyone,
Yesterday Davis had a complete round of scans. We were not scheduled for scans again until late January, but over the past few weeks Davis has been waking up at night crying with his leg hurting. At the same time, he has been complaining of pain in his abdomen -- right around his original tumor site. We are very grateful to report that all scans were clean and his counts were good. The only explanation for the pain in the leg is the plate on his leg and the pain in his abdomen is probably due to some adhesions and/or scar tissue from his previous surgery.
It was exactly one year ago that we were faced with our first relapse scare and we were right in the middle of our Magic Moments wish trip to the Spongebob Hotel! We were blessed with so much to be thankful for last Thanksgiving and have once again been given a wonderful Thanksgiving blessing!
Take care and thanks for continuing to check on Davis!
Sheri
Thursday, October 19, 2006 10:48 AM CDT
For those of you wondering how Davis surgery went ... it didn't! When anesthesia hadn't contacted me the day before he was scheduled for surgery as they usually do, I called the ENT's office only to find out that due to some miscommunication he was not put on the surgery schedule. Most everyone knows that I was quite conflicted about putting him through another surgery that very well may not do anything to correct his sinus issues, so I was actually relieved when he wasn't on the schedule. The nurse said that Dr. Shirley still had time on his schedule and that we could get him on the schedule without a problem, but I quickly said no thanks and we proceeded to enjoy their two days off of school with no medical issues to tend to. I think this was my sign that we are not quite ready for surgery yet. While I know the snot is bothersome to most everyone other than Davis, we are just going to ride it out a little longer. Surgery may be inevitable, but we'll see.
Otherwise, everything is going great. Lilly the labradoodle, has recovered quite nicely from her broken jaw. We had parent-teacher conferences this week and those went well, also. Life is good!
We hope that everyone is coming out to the Knockin' Cancer out of the Park fundraiser being organized by our friend Andrew Long to raise funds for the neuro-oncology unit at Children's. Here is some information on the event take from Andrew's website:
"This year the Second Annual Knockin’ Cancer Out of the Ballpark benefit is scheduled for Sunday, October 22nd. Several other brain tumor patients and their families will be joining our efforts. The event last year was a wonderful family event and it promises to be bigger and better this year. The gates will open at 1:00 – there will be a Fun Zone for kids with the therapy dogs from the Hand-In-Paw organization, moon walk, face painting, games, give-aways, concessions, college mascots and more. All kids are invited to participate in the pre-game ceremony starting at 1:45. The game will start 2:00 and admission is free with a donation.
If you cannot attend the game but would like to make a donation: Make checks payable to Children’s Hospital and write “softball game” on the memo line. All donations are tax deductible and can be sent to:
Anne Long
2509 Shades Crest Rd.
Birmingham, AL 35216"
For directions, visit Andrew's website at www.caringbridge.org/al/andrewlong. We hope to see you on Sunday!
Take care,
Sheri
Tuesday, October 3, 2006 9:21 AM CDT
The training wheels came off and off he goes .....
TWO YEARS AGO ....
Two years ago .... we found out that Davis had a tumor in his abdomen and that the tumor had metastasized into his bones and bone marrow and probably even more places that were yet to be identified.
Two years ago ... we were told that Davis had neuroblastoma - one of the most dreaded forms of childhood cancer.
Two years ago ... Davis had surgery to remove his tumor and that surgery would also confirm that the cancer had spread to some lymph nodes.
Two years ago ... we didn’t know what the next two years would bring.
Davis is oblivious to what happened to him two years ago this week. A few weeks ago I was talking to him about something we had to do or some medicine he had to take while he was on treatment. He looked at me in a puzzled way and said “When was I sick?” I said you remember when you were sick, when we had to go to the hospital a lot and you had to take all that yucky medicine? He said, very matter-of-factly ,“I wasn’t sick.” Pretty amazing, huh?
We also know that during the past two years Davis missed out on a lot of what other boys his age were doing. As a result of his weakened bones, he couldn’t run, climb, skip, or ride a bike. Even after he was off treatment, there were the bone lesions and open bone biopsies that kept him from doing a lot of things that the other kids were doing. So this weekend, the two year anniversary of his diagnosis and surgery, he decided it was time to ride his bike without his training wheels. He and Michael got out in the driveway on Saturday morning. After about only 30 minutes, he was riding that bike like he had been doing it for years. I know this may not sound like much to most of you, but it was a very special moment for us. Some of the milestones that we take for granted with our other children turn into extra-special milestones for Davis and each one that he reaches just reminds us that he is beating the odds.
Other events of the week ... Davis is having yet another surgery on Thursday in an attempt to get his sinus issues cleared-up. We have pretty much reached the end of the road treating him medically, so this is the next step. Everyone please keep us in your prayers this week as I am irrigating his sinus cavities twice a day and trying to tell him that it is for the best.
Also, Lilly, our new labradoodle, had a run-in with a car yesterday and suffered a broken jaw. She is okay, but is having surgery today to set her broken jaw. We are not having good luck with our dogs!
As always, thanks for checking on us!
Sheri
Wednesday, September 20, 2006 9:03 AM CDT
Another scan day has come and gone and once again, life is good ... God is good. Davis continues to thrive and for this we are truly humbled and grateful. We are now 1 ½ years from transplant and are beginning to extend his time between scans. His next scans will not be until the last week of January, 2007 and after that, not until June, 2007. I’m trying very hard to just let go and see this as a huge blessing and benefit -- but it’s hard. It is hard when you are seeing the devastation of this disease all around you every day.
Yesterday, heaven welcomed its newest NB angel. A 9 year old girl from Ohio named Christi Thomas. While I had never met “The Thomas Team” as they were known personally, I knew them through an internet neuroblastoma support group that I’m a part of. This family has fought so hard for four solid years and has left no stone unturned in Christi’s treatment. Despite all of their best efforts and Christi’s determination to fight, neuroblastoma took her life. I had been reading the Thomas’ online journal for the past several weeks chronicling Christi’s fight and her last days with her family. It is truly heartbreaking to read her parent’s words about watching their child die in horrible pain. Their words are poignant and heartfelt, but nonetheless agonizing to read. This follows my conversation with our friend Shannon when I attended the funeral of Bailey a few weeks ago. To hear her recount the last weeks of Bailey’s life with his physical appearance distorted from the tumors growing in his body to the bones in his little legs crumbling as the cancer ate away at them literally makes me sick to my stomach. I would encourage you to go to Christi’s website and read about her life and it’s way too soon ending. I think many will then understand why we, as parents of children with cancer, live each day in fear all the while trying our best to continue to be positive, uplifting and grateful for every good day.
Thank you all for your continued prayers and support.
Take care,
Sheri
Monday, September 11, 2006 11:40 AM CDT
Hi, all,
Davis is going to have a busy couple of weeks coming up. He has scans again next Monday. He then has an appointment with the new ENT on Thursday. They are taking some special CT scans of his sinuses while he is on the table on Monday for that. He then will return to see his pediatrician on September 22 to restart his vaccinations. If we look at the bright side, we can say that he is ONLY going to have to repeat his entire tetanus and polio vaccinations. In addition, he will need all of his five-year boosters that he missed. I just think it's amazing that he retained ANY immunities at all after what he went through. If I understand this correctly, there are a total of 4 shots in the tetanus series and 3 in the polio and it seems like Will got two or three shots for his five-year boosters. Bless his heart, it seems he just can't get a break.
School seems to be going well (for Davis, anyway). Davis is proudly bringing home his reader books and weekly reading logs. So far it seems to be coming very easily for him. Michael and I noticed a long time ago that he is much more interested in academics than Will.
Will started Fall Baseball this weekend so that will take up our Sunday afternoons for the next 8 weeks. At least there are no weekly practices to worry about.
I will update again following Davis' scans. Take care, everyone!
Sheri
Monday, August 28, 2006 8:51 AM CDT
Hi all,
I am deeply saddened to report that our friend Bailey passed away Saturday. Bailey was diagnosed a few months before Davis and they went through most of their treatment together. They were even in transplant at the same time. Bailey relapsed in January. At the time Davis was diagnosed, there were two other boys with NB on treatment at Childrens: DJ and Bailey. DJ lost his battle last November and now Bailey. It is the reality of this disease.
We did get Davis' pathology back on Friday and everything was fine. He will have scans again the week of September 18. We will continue to be grateful for each and every day.
Take care,
Sheri
Thursday, August 17, 2006 5:48 PM CDT
Hi, all,
The first week of school has not been without some interruptions. Last week we noticed a couple of small knots on Davis' chest which caused us some concern. After consulting with our pediatrician and Davis' surgeon, they agreed that while they didn't think it was anything serious, it was a good idea to get them out and biopsy them. So today we had the two knots removed. He has a couple of small stiches over each incision, but is sitting at the table doing crafts as I write this. He says it only hurts when he raises his arms, so of course I told him not to raise his arms. The surgeon seemed to think that the largest knot is a cuff left over from his central line. It must have been embedded somewhere in his chest wall and worked its way to the surface. He thinks the other spot is scar tissue from his previous port incision. We still have to wait on the official pathology report, but feel much better knowing this. I'm sure Davis is happy, too, since we will not be constantly driving him crazy by poking and prodding and feeling him all the time. He will probably stay home from school tomorrow, but by Monday he should be back to normal. Lilly the new labradoodle is doing great. She is very sweet and extremely intelligent. Other than just the usual annoying puppy behaviors (biting, jumping, chewing and nipping), she has been a lot of fun and hasn't destroyed anything of much value --- yet.
As always, thanks for checking on Davis!
Wednesday, August 2, 2006 10:43 AM CDT
Hi, all
Davis' follow-up CT on his lung yesterday went well. Whatever it is or was, has mostly resolved. We are very relieved and will continue to pray for no other complications or problems. He will have scans again in late September. He has essentially finished the medication prescribed by the ENT but as we anticipated, the snot still lingers. Not even two days after finishing, it was right back. He will see the ENT again next week and we'll see what he suggests from here.
It is hard to believe that summer is coming to an end and the kids will start back to school next week! It is also amazing to think that Davis is starting the 1st Grade! The little boy that wasn't supposed to start kindergarten continues to amaze us and bless us each day.
Thanks for checking on Davis.
Sheri
Saturday, July 22, 2006 12:05 AM CDT
Hi, all!
Davis had his ENT visit last Monday to see about his snot problems. He was put on three different medications and we will see where that gets us. If it doesn't help, we will be referred to someone else for possible surgery evaluation. While we certainly don't want to put him through any unnecessary procedures, the sinus issues and resulting sinus infections have become a pretty big problem. He also has his follow-up CT Monday week to take another look at his lung. I'll be sure to let everyone know the results of his CT.
We have a new addition to our family. ANOTHER black labradoodle. Thankfully, she had already been given a very lady-like name when we picked her out -- Lilly. Otherwise, I'm sure the kids would have named her after another of my favorite Nickelodean characters, like Squidward or Sandy the Squirrell. She is settling in and once again is doing EVERYTHING a puppy does -- chewing, peeing, pooping, eating and sleeping. I think she is going to fit right in. I've posted a couple of pictures of her in the pictures link.
Please continue to pray for our friend Andrew as he endures tranplant and also for Bailey who has disease progression.
Thanks for checking on Davis!
Tuesday, July 11, 2006 9:52 AM CDT
Hi, all,
We had another great trip to the beach, but I think the kids may be a little "beached out" for now. After hearing "When are we going back to the beach?" over and over again, it seems that after two trips in less than a month, they are done. Davis did start feeling puny while we were there and was running a fever. After a call to Dr. Nichole, we concluded that it was more than likely his snotty, impacted sinuses giving him trouble again. So we are on another 21 day course of antibiotics to clear it up for a few weeks. After that, we've got to get him back to the ENT to see if there is anything to be done about his sinus problems. He will also be scanned again on July 31 to take another look at the spot on his lung.
We are enjoying summer. I am working three days a week and the boys are going to a summer day camp and seem to really be having a good time. We spend most nights after dinner outside just riding bikes, playing ball and enjoying doing much of nothing until it is dark. Then, as darkness sets in, we run around catching lighting bugs and crickets. Nothing more than just enjoying the simpleness of everyday life. Soaking in each precious moment and not worrying about baths and bed times. I would like to tell you that cancer is the furthest thing from our minds but unfortunately it is never far away. Everyday I hear of another relapse or another lost fight. I hear about those who appeared to be winning the battle. They are three, four or even more years out of treatment. They are seemingly in good health, only fighting the after effects of the immense treatment they received. Then they are hit with the devastating news that the beast has returned. Will I ever be able to sleep completely at peace every night knowing that my baby has won his battle? I don't think so. But for now, we will keep enjoying every moment and keep trying to live life like we all should -- never knowing what tomorrow may bring, but being truly grateful that we had just one more good day.
As always, thanks for checking on Davis.
Sheri
Monday, June 26, 2006 3:00 PM CDT
Another scan day has come and gone. We are back at home baking a "Happy Scan Day" cake to celebrate. For the most part, everything was good news. Davis' counts are good. His bone scan showed only abnormalities from his previous bone lesions on his arm and leg. The CT did show a small area in the lower part of his left lung. While they do not feel it is a huge cause for alarm, they are going to take another look at the lung in a month. We also have to wait for Davis' urines to come back, which will take a few days. If his urines are elevated, it is much more likely that there is something going on. We don't expect that to happen and are satisfied that his doctors are doing the right thing by rescanning in a month.
We are leaving for the beach Wednesday afternoon and will be back on Sunday. Davis' Lemonade Stand was a success and we even got about 10 seconds of news coverage for the event. We do, however, have a lot of lemonade left over. We will be setting up on corners around Vestavia in the coming weeks, so keep an eye out for us.
Sheri
Tuesday, June 20, 2006 11:30 AM CDT
Sorry so long between updates, but we have just been enjoying summer and keeping busy. We were able to enjoy an entire week at the beach the first week of June. The kids had a great time and our good friends the Reuter's joined us. The weather was unbelieveable, but there were a few jelly fish in the water throughout the week. We returned home on Saturday evening, just to repack Davis' clothes and get him ready for Camp Smile-A-Mile. I was skeptical about him staying all week, but he was such a trooper. I understand he had a wonderful time. Unfortunately, he was quite bored when he got home because of the non-stop, fun activities that they have planned for the kids. Once again, we are very grateful for all of the people who give so unselfishly of their time to make this such a special week for these kids. Scans were postponed until next Monday, June 26. We hope to get a few more days in at the beach leaving on the 28th and staying through the weekend.
We also want to tell everyone about Davis' first Lemonade Stand to raise money for pediatric cancer research. It will be this Saturday, June 24, 2006 at the Birmingham Rugby Club Summer 7's Tournament at the Hoover Met Soccer Fields. Coca-Cola has been very gracious in donating the lemonade and drinks for the event. If you've never been to a rugby game, it is bloody good entertainment! Everyone come out and buy some lemonade for a great cause.
My heart and mind today are with our friends the Longs as Andrew has his MRI.
We will update again after scans. We hope everyone is having a great summer so far ...
Take care,
Sheri
Wednesday, May 17, 2006 12:39 AM CDT
Hi, all!
Things are going well and we are all exhausted trying to wrap up school and get things arranged for the summer. We don’t have any major plans now, just one week-long trip to the beach in early June. Davis is also going to week-long camp at Camp Smile-a-Mile the following week. We would like to take a few weekend trips over the summer and I think I’ve promised Will a trip to Six Flags.
We were supposed to have our regular clinic appointment next Monday but thankfully, I realized before it was too late that it was scheduled the same day as MAY DAY PLAY DAY. Now for those of you who don’t know, May Day Play Day is a big deal around here. Davis has been crossing days off the calendar for two months now counting down to the “Big Day.” There is no way we were going to miss even 10 minutes of May Day Play Day to go to clinic. Instead, I was able to reschedule his appointment for this past Monday. He has been having a little bit of belly pain and leg pain so we needed to get him checked out anyway. After a few x-rays, about six viles of blood and a lot of poking and prodding later, we received Dr. Nichole’s blessing until scan day on June 19. He has finally started to gain a little weight and is almost up to 38 pounds. He distinctly remembers that he weighed 39 pounds when he was diagnosed. I’m sure his weight obsession is our fault as we have had to monitor his weight so closely and he is always getting high-five’s when he gains even a couple of ounces.
This school year has flown by. It seems like just a few months ago that we were struggling with the decision to send Davis to school. In another way, it seems like a distant memory and it’s hard to think of him being as sick as he was last spring and summer. When I look a pictures of him from not even a year ago, he is hardly recognizable to me. Maybe it is just a mental block to not remember how sick he was in transplant and how bad he looked for so long. We certainly have no regrets about our decision to send Davis to school. We emphatically know that we made the best decision for him. We have had people accuse us of making the best decision for “us” because this is what Michael and I wanted for him, not what was actually best for him. As his parents, we knew in our hearts that being at school with other children and being as normal as he possibly could was what Davis really wanted and, in turn, what was best for him. Other than his bone issues, he’s been very healthy and happy. His teacher is absolutely wonderful and has shown so much care and concern for him. He has made many good friends, including a very special “girlfriend.” We have truly been blessed with a great year.
Thanks for checking on us.
Sheri
Monday, May 1, 2006 8:10 AM CDT
Yesterday we said goodbye to Cosmo. It was very sad and the kids don't understand. But Cosmo was very sick and yesterday it was evident that she was suffering. We had only had her since November, but she had become part of our family and my constant companion. She had a very sweet, gentle spirit. She will be missed.
Sheri
Friday, April 21, 2006 8:44 AM CDT
I am writing this update with a very heavy heart. I think that most parents who write and post updates on these sites do a very good job of making cancer look somewhat effortless. We tell funny stories and share the "cute" things that happen every day. After all, no one really wants to know how ugly this disease is, right? No one really wants to hear all of the bad stuff that the kids, their parents and their brothers and sisters endure every day. No one really wants to know the constant fear that consumes you every day. The frustration, the tears that are shed and the pain that we all feel. You hurt for your child. You hurt for all the other children suffering. You hurt for all of the other families that are suffering, too. It's ugly. There's no other way to say it.
I have people ask me all the time, "How do you do it?" Unfortunately, I wasn't given a choice. The choice was made for me. I don't know why I was chosen, but I was. I was given this very special gift and he was entrusted to me. I thought my job was to teach him, raise him, guide him and that he would learn from me. But I've come to the realization that he is here to teach me and guide me. He has made me a better person. His journey has given me a clearer perspective on our life and how we should live it. He is the strongest person I will ever know.
Cosmo the labradoodle is not doing very well. She started having seizures in mid-March and continues to deteriorate. We took her to a veterinary neurologist in Opelika this week and he feels she has some type of disease that has affected her central nervous system. She continues to have seizures several times and week and is beginning to have trouble walking. Her legs will just give out on her and she will just fall down. It is very hard to watch her this way and know there isn’t much we can do. They ran a lot of tests and we are waiting for those results, but the doctor wasn’t very optimistic about her prognosis. She is such a sweet dog and loves the kids so much. It’s very sad.
Now for the happy update ... We had a wonderful Easter. We all got ready for church, but once, again, my ADD kicked in and I paid no attention to the Easter Service Schedule. For some reason I had in my head that services were at 9:30 and 11:00. But... they were at 8:30 and 10:30. We arrived at church at 9:15, feeling very proud that we were all dressed and even early for once, only to see the very large banner announcing the service times for 8:30 and 10:30. So, we turned around and went back home and left at 11:00 for Michael's mom's house. My mother was quite ashamed of me, but we all had a good laugh.
Davis had a wonderful birthday at Viva the Chef. They created all kinds of interesting chocolate creations and had a great time being Chef's for the day. He hasn't said another word about Pump it Up, so I'm not going to bring it up. After having to take out a second mortgage on the house to pay for the Viva the Chef party, I hope he forgets about Pump it Up.
Davis’ leg is healing nicely. He has abandoned all of his medical equipment, including his leg brace and, once again, we are constantly reminding him to be careful. Last night as he was taking a bath he asked me to feel his leg. His little legs are so skinny that you can clearly feel the plate and screws on his bone. Thankfully, he seemed fascinated by this and kept trying to count the screws in his leg.
Davis seems so well right now. He is just so happy and vibrant. His latest thing is he loves to write me and Michael notes. He is always leaving little notes lying around the house saying "I love you Mom" or "I love you Dad." He even includes Will and Macy sometimes. Davis generally is not a very affectionate child, so for him to express himself in writing with these notes is so heartwarming. I will cherish these notes forever.
We have a clinic appointment on Monday, April 24 and will probably rescan again in May or June. Sorry for the long update, but I had a lot on my mind.
Take care,
Sheri
Friday, March 24, 2006 9:50 AM CST
UPDATE - MARCH 29, 2006
After having a specialized bone pathologist at UAB review Davis' scans and pathology slides, we now have a diagnosis of Chronic Recurrent Multifocal Osteomyelitis. This condition causes painful lesions and inflammation of the bone with no known cause. While we are upset that we have yet another ailment to add to his list, we are very grateful that we now have a reason for his current bone issues. I believe the new course of action will be that if he has another occurrence of a bone lesion, he will be worked-up with all of the usual relapse tests. If all of his tests show no evidence of disease, he will be treated for the Osteomyelitis. If the lesions do not resolve or get better with treatment, then a biposy will be considered. We hope this will save him from future invasive procedures.
Davis (rather reluctantly) returned to school on Tuesday. We knew that once he got to school he would be fine, and he was. He and his new wheelchair were the center of attention and he was very proud that his special friend, Piper, was the first one to push him around in his chair. We think that he will only have to use the wheelchair for another week or so and he will soon be walking with just his brace. He will see Dr. Killian again on Wednesday for a post-op recheck and suture removal and will return to clinic the following week.
________________________________________
Hi, everyone,
We haven't updated in several weeks as we've had a lot going on. It all started about four weeks ago when Davis started complaining of leg pain. He was also limping some and having difficulty getting in and out of the car, climbing stairs, etc. Davis' doctors quickly scheduled a bone scan which showed a large spot on his left femur. We knew what this meant and once again they told us they felt it was probably disease and scheduled all of the follow-up tests. The next week we had a CT, bone marrows and an MIBG, along with about a zillion x-rays. All of his tests were normal except for the CT, which showed an abnormal spot on the leg. All of the doctors agreed that this spot was very suspicious and that it needed to be biopsied. We were admitted last Tuesday and Davis underwent an open biopsy of his left femur. He now has a plate and screws in his leg and will be wearing an immobilizer for the next 4 to 6 weeks. The good news is that once again it was not disease. The bad news is that they don't know what is causing these painful bone lesions, but his doctors are going to investigate further to see if we can get an explanation and hopefully spare him from future painful invasive procedures. The first couple of days he was in a lot of pain but yesterday, he decided it was time to get up and he has been hopping all over the house using his walker and requesting special food orders and fancy fruity drinks. He is so much stronger than we think he is. He just keeps amazing us with his tenacity and courage. I know I've said this a lot, but he is an amazing kid.
Unfortunately, this development is going to mess up his birthday plans. Since he had such a crummy birthday last year, we promised him whatever he wanted to do for his birthday this year. He quickly announced that he wanted to have his party at Pump-It-Up and immediately started to write invitations to everyone he knows. Obviously, there is no way he is going to be able to have a party at Pump-It-Up in two weeks. So, we will be having two parties this year. One on his birthday and another one at Pump-It-Up when he has recovered. After looking very heartbroken at first, he quickly decided that having two parties wasn't a bad thing ... no matter what the circumstances.
Once again, we are very grateful that he remains cancer-free. Another milestone this month is that we now mark one year since transplant. Overall, we have had a very good year and will continue to pray for many more in the future. Thanks for checking on Davis!
Sheri
Tuesday, February 28, 2006 10:00 AM CST
I am finally updating with a report on the Mercedes Marathon. I know it was almost three weeks ago now, but I think it has taken me that long to thaw-out! First I want to tell everyone about the Kids Marathon on Saturday. I wasn't sure how Davis would do, but let me tell you... he ran his heart out. He ran almost the entire mile! He started out running and then he would start to slow down. Then someone would pass him and he was determined he was going to keep up and he would just speed up and keep going. Right at the end he was really pooped, but Michael met us close to the finish line and picked him up and carried him the rest of the way. Not even a year ago, he was in transplant enduring the most terrible treatment imaginable and not quite a year later, he is finishing a marathon! He is an amazing kid.
Michael and I ran the relay on Sunday. It was bitterly cold, but once you got moving it wasn't that bad. We had one of our team members back out on Friday night, but we were lucky that we were able to find a replacement on very short notice. Thanks, Buddy! There was also a little mix up at one of the relay hand-off points and my good friend, Kelli, had to run her leg and the next leg in order to hand-off to me. We are very grateful for her determination to keep going so that our team was able to finish. We also want to thank all the teachers from West who ran on the Team Davis Teacher Relay Team. We so appreciate your willingness to run in honor of Davis. We are already thinking about next year, so get ready! Thanks to everyone who supported us and Team Davis to help raise money for pediatric cancer research.
We go back to Clinic next Monday for counts and for audiology re-check and then we rescan in late April. I've posted a few new picture taken at the Marathon. Everyone please remember our friend Bailey in your prayers as he fights relapse.
Thursday, January 26, 2006 9:54 AM CST
\CLEAN\ adj : free from contamination or disease. Clean. What a wonderful word! The Good Lord has shown his mercy on us once again and Davis is still living in a cancer-free world! Life is good! God is good! Pretty amazing considering the grim outlook we had just a few short months ago. So for now we will continue on about our lives as normally as possible. We do not have to go back to clinic until March and will have scans again in April. Will will be starting baseball soon and I'm sure that will occupy our time until late spring. Cosmo the puppy is growing a lot and after a pretty trying week where we were very close to selling her to a band of gypsies, she has settled down and is establishing herself as a part of our family. Macy will be celebrating her 3rd birthday on January 30 and Davis continues to love going to school. Michael and I are getting ready for the Mercedes Marathon and we still would like to encourage everyone to consider making a donation to Team Davis for pediatric cancer research. We have been so fortunate to have such a wonderful group of doctors and nurses taking care of Davis. I cannot imagine what it would have been like without them by our side. These doctors and nurses walk this long road with you. They have always been there when we needed something, no matter how unreasonable we may be, mad, angry, happy, sad or bitter. They are never judgmental and are always comforting and supportive. My greatest wish is that we didn't need a pediatric oncology group of doctors, but unfortunately we do. Throughout the terrible treatments and sickness, we couldn't have been given any greater gift than to have this exceptional group of people to walk this journey with us. So, in our small way, it's about giving something back to them and to all of those families that come after us.
Thanks to everyone for your continued prayers and support!
Sheri
Tuesday, January 10, 2006 5:56 PM CST
I'm sure everyone remembers my moment of temporary insanity when I volunteered to run the half-marathon back in the fall. Shortly thereafter is when we thought Davis had relapsed. At that point, training for a marathon was the last thing on my mind. Well, Valerie, the marathon coordinator and the mom of Davis' class-mate, was not going to let me off the hook so easily and I am now running as part of a relay team in the full marathon. I believe I am also on the same team as Davis' wonderful teacher, Mrs. Cooke, and some other teachers from West. I will run the last leg of the marathon (7.6 miles) and the entire family will complete the last mile of the marathon together. Isn't that symbolic of everything we have been through? What a long and greuling race but in the end, we will all finish together. I know that will be a very emotional time for me. Well now that everything has settled down it is time to get to work. After all, the main objective of this is to raise money for Team Davis and the UAB Department of Pediatric Oncology. Since I got such a late start, I've got a lot of catching-up to do. I sent out about 50 e-mails today and already the Team Davis total went up from $200 some odd dollars to over $600 in just a few hours! It is such a good feeling to know that we have such good friends behind us who will support us in these endeavors. Anyway, the running part isn't going to be pretty. I understand that the last leg of the marathon is quite hard and there are a lot of hills. I have a feeling I'm going to be walking ALOT! But I'm not doing this to break any time records. Finishing the race is my main objective and when I'm struggling and I'm only on mile 2, I'm just going to think of the long, hard struggle that Davis has endured and I have a feeling that's all I'm going to need to keep going. I am posting the link to Davis' donation page in the "links" section of this page. If anyone is interested in making a donation of any amount, you can copy and paste that link in your browser and follow the directions there.
On the home front, everything is great. Davis had an ear infection the week after Christmas, but thank God for ear infections! It felt really good to be able to take him to his pediatrician and have it be something as simple as an ear infection. Oh, how good it feels to be normal again! Scan day is January 23, but I feel very positive about scans this time.
Take care and thanks for checking on us.
Sheri
http://www.active.com/donations/fundraise_public.cfm?key=vestaviawest)
Monday, December 19, 2005 9:01 PM CST
Once again, I am glad to write an update where I don't have anything to report! Davis is doing very well. His arm is healing and is he is using it more than he probably should. He wore his sling for just a few weeks, but once the soreness was gone, he thought he was healed. We still encourage him to be careful, but he doesn't want to be considered "different" and the arm is just a reminder that he is "different" from other kids his age. Unfortunately, he will always be just a little different as the effects of the large amounts of chemotherapy he received will always follow him. That's just something we will have to deal with and are, more than anything, just grateful that he is here with us and doing well. We have enjoyed not having to be back at the hopsital several times a week since we got our good news. We do have a check-up with the orthopedist this week and also a clinic visit just to get the once-over and blood work done before Christmas. Hopefully, we will not have to go back until we have scans again in late January.
The entire family is very excited about Christmas and we are so thankful to be enjoying Christmas without "cancer" hanging over our heads. It has been such a big part of our lives for the past year that to not have to plan our lives around it right now feels like such a luxury.
As you and your family celebrate Christmas please remember those lost throughout this past year to this terrible disease which so viciously invaded our lives. Remember those parents who are struggling with what should be such a special time of year, but are facing the holidays without their precious child. Please gather your family close and give thanks that you have each other and most importantly, never forget the true meaning of the Christmas season.
Many blessing to everyone!
Merry Christmas
Sheri
Friday, December 2, 2005 8:26 AM CST
Hi, everyone!
As you can imagine, we had a wonderful Thanksgiving as we are so grateful for Davis' continued NED status. His arm is much better, but with a big chunk of his bone gone from that arm, we still have to be very careful for the next month or so. We will have regular scans again in late January and pray that he stays well through the holidays.
Will and Davis will be riding on a fire truck tomorrow morning during the Vestavia Hills Christmas Parade so everyone keep an eye out for them. Scarlett Cowan, Andrew Long and James Howell (all children from our community fighting different forms of cancer) will also be riding fire trucks in the parade. Isn't it terrible to have so many children from right here in our community suffering from this horrible disease?
Cosmo the Labradoodle is continuing her adjustment period into our household (as I am, too!) She is as cute as she can be, but I have a feeling she is going to be a real handful! She loves the kids and they love her and so far, she is very patient with them picking her up and dragging her all over the house.
"The Lord is my strength and my shield; my heart trusted in Him, and I am helped; therefore my heart grately rejoices, and with my song, I will praise Him." Psalm 28:7
Take care,
Sheri
Monday, November 21, 2005 2:25 PM CST
We got our miracle! The pathology results show NO EVIDENCE OF DISEASE! What more can I say? We have so much to be thankful for. Thank you everyone for keeping Davis close to your hearts in prayer.
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13
Wishing everyone blessings this Thanksgiving week!
Sheri
Friday, November 18, 2005 12:09 AM CST
After a "meeting of the minds" at Childrens on Wednesday, we were called and told that a decision had been made to biopsy the spot on Davis' arm. So we arrived at Children's Hospital on Thursday morning and had the procedure done. It was quite an invasive procedure as they took approximately 20% of his bone mass at that particular spot on his arm. He will be wearing a sling for about 6 weeks and his arm will be very susceptible to breaking should he have any type of fall or injury. He has a nice two inch incision on his arm ... just another scar to add to his battle wounds. Dr. Killian put in a wound drain and wanted him to have 24 hours of antibiotics prior to letting him go home. So we spent the night and arrived home around lunch time today. He is very sore, but the pain medication seems to keep him comfortable. We will not have any pathology results until next week. As you can imagine, we are very anxious and this will be a very long weekend for us. Thankfully, there is a big diversion tomorrow otherwise known as the Iron Bowl. Dr. Killian was very noncommittal of his assessment of what he saw in Davis' bone. He did say, however, that there was no destruction which is common with advanced bone disease. We are encouraged, but will wait until we hear the final results next week until we let out a sign of relief. Please continue to pray for that miracle we are all looking for!
Roll Tide Roll!!!
Thursday, November 10, 2005 2:47 PM CST
Hi, everyone!
We made it back safely from our trip to the "Spongebob Hotel!" We are all worn out, but glad to be home. The trip was amazing! The Spongebob Hotel was all that Davis had hoped it would be (and more!) It is a kid's paradise. They have a huge pool area that makes the Visionland Water Park look like a kiddie pool. It's just fun, fun, fun all the time. I also can't say enough about Give Kids the World Village. What a wonderful place. They do so much for the wish families. We also want to say a special thank you to everyone in the community who gave us such a great send-off on our trip. We appreciate everyone's kindness so much! We've got LOTS of pictures that we will be posting. Since we are limited in our photo space here, you will be able to see lots more at www.davishartsell.com. But give me a few days to those posted. I'll be unpacking for the next three or four days!
On the medical front, we still don't have answers. After another week of greuling tests, nothing seems to be conclusive. There is somthing in Davis' arm. Everyone seems to agree on that. What no one can tell us is what it is. Three weeks ago, we were told that they were 99% sure it was disease. Now, the pediatric orthopedist doesn't want to biopsy the spot. What they want to do now is just watch it and scan him again in six weeks. Michael and I are not sure how we feel about waiting six weeks. We know all too well how quickly this disease can take over. We are, however, very encouraged that none of his other tests indicate disease, but still are not comfortable with the "wait and see" approach.
Once again, thanks to everyone for everything you have done for us. Please keep praying for a miracle!
Thursday, October 27, 2005 12:51 AM CDT
I wish we had some definitive answers to give everyone, but we don't. The good news is that all of Davis' scans this week have shown no evidence of disease. The bad news is that there is definitely something in his bone in his arm and we have to find out what it is. The doctors are still telling us that it is most likely disease, but we can still hope and pray that it's not. Unfortunately, in order to find out what it is, they are going to have to perform a biopsy. But first, more tests. Another CT and this time an MRI. This is our tentative plan at this time: Schedule the CT and MRI as quickly as possible and meet with the orthopedic surgeon hopefully early next week. Go ahead and leave for the Spongebob Hotel (as Davis calls it) next Thursday. Let him have the time of his life and then come home and have the biopsy.
We want to thank everyone for your care and concern for Davis. We will update as we have more information.
Thursday, October 20, 2005 5:56 PM CDT
This is not an entry that ever wanted to have to write, but knew deep in my soul that I would have to. Unfortunately, it is way too soon and I'm not ready. Are you ever ready? No. You have to try to prepare yourself, but you are never ready to hear those words. Those words that will turn your life upside-down ... again. The anguish, the heartbreak and fear of the unknown. Here we go again. If you haven't figured it out by now, or haven't heard, Davis has relapsed. We don't know much right now. I had thought I could or would wait until next week until we had our game plan in place, but it seems that this is something that needed to be done now. All we know right now is that he has a spot on his arm. Yes, the arm. The arm that was insignificant a month ago is no longer so insignificant. He will have tests all next week to see if it has spread. We don't know what we are going to do, those decisions will be made next week. All we know is that it's back. We will pray for guidance to do the right thing for Davis.
I will update next week as we know more.
Tuesday, October 11, 2005 12:26 AM CDT
Well, I promised an update on the Mercedes Marathon, and here it is. I did attend the Vestavia West Elementary planning meeting on Thursday night. I went there with the expectation of talking about the Kids Marathon and how to encourage participation through-out the school. The presentation was very inspirational and before I knew what was happening, I was raising my hand to run the half marathon! Afterward, I went home thinking, "What have I done? I can't run a half marathon!!!" I lay awake most of the night running it all through my head. How am I ever going to be able to run 13 miles?? Then it hit me. If my son can endure what he did during the last year, then I certainly can run, walk or crawl 13 miles. And so it is. Now, if I can do it, then so can a lot of people. It is now my mission to recruit as many people as I can to be a part of "Davis' Team" and to do what we can to raise lots of money for pediatric cancer at Children's Hospital. We are getting to work on a logo for Team Davis and I've got to start training and gathering support. We would all like for West Elementary's first year participating in the Kids Marathon to be bigger than anyone ever expected. If you would like to make a donation to Davis' Team or if you would like to run with us, please contact me and I'll give you all the details. There will be lots more information to come in the near future.
Davis is doing pretty well. He will have another CT scan next week and I'll make sure to let everyone know how that turns out.
Don't forget about Andrew's Softball Benefit game this Sunday at Samford University.
Monday, October 3, 2005 1:49 PM CDT
Hi, everyone!
Not too much to report, which is good! As you can see from the new picture, we were able to go to the beach. It was a fun, but hectic, weekend. The weather was wonderful, but the water was pretty murky and rough until Sunday, the day we were leaving. That morning the water was so calm and clear. They had the most fun Sunday morning playing in the water and chasing the fish.
Davis has had a pretty good couple of weeks. His sinus infection seems to be cleared up. No snot! We haven't been snot-free for a long time. He just finished his course of antibiotics and we will have another CT scan in a couple of weeks. He has still been complaining of some leg pain and pain in his right arm which is the arm that showed some abnormalities in his last bone scan. He hasn't has a headache in a while, so I'm assuming that all of that impacted snot in his sinus cavity was causing his headaches. The last word we had on the spot on his lung was that is may be radiation scarring. He will also have a repeat CT of his lung in a couple of weeks and the oncology doctors were going to consult with the radiation oncologist on that.
On another note, I am attending a planning meeting for the Kids Mercedes Marathon this week and hope to organize a "Team Davis" to participate in the Marathon to raise money for Children's Hospital. Please check back for more information on how to participate in this exciting event!
Have a great week!
Sheri
Saturday, September 10, 2005 12:05 AM CDT
Just a quick update on the happenings of the week. We had planned to leave for a quick get-away to Perdido Key on Thursday afternoon with our good friends and neighbors, the Reuters, but a phone call from the school took care of that. Instead of spending a fun-filled few days with no cares playing on the beach, we spent the last three days in the luxurious accomodations of Children's Hospital. Davis started complaining of severe jaw and face pain at school Thursday morning. I picked him up from school around 12:00 and we were at the hospital with a fever by 2:00. That turned into a three day admission for what turned out to be a sinus infection. So we missed our beach trip, the only trip we had planned anywhere in a year. We let Will go ahead and go with our neighbors and I think he's having a great time. At least one of us got to enjoy the beach. Davis is doing fine and he quickly got better with some heavy-duty IV antibiotics and he will continue oral antibiotics at home for 14 days. He had a CT of his face and jaw areas yesterday and since he was scheduled for a repeat CT of his chest on Monday, they did both of them at the same time. The spot on his lung is "unchanged." We still have no explanation of what this spot is or what it could be other than a spot of pnemonia, but they will continue to watch it closely.
Thanks for checking on us!
Wednesday, September 7, 2005 11:50 AM CDT
I've put off writing this update for several days in order to catch my breath. Last week was a terrible week, in more ways than one. Ours started with a questionable spot showing up on Davis' lung during CT scans on Monday. Then there was the storm and all that entailed. No power, no school, etc. Then on Wednesday, a couple of suspicious spots showed up on Davis' right arm during bone scan. MIBG scan was not until Thursday, so you can imagine how anxious we were. Michael went with us to MIBG on Thursday because I knew I couldn't be there alone if the news was not good. Thankfully, MIBG and bone marrows were "clean" and we could let out a sigh of relief. They do not know what the spot is on his lung, but he will have another CT scan next Monday to take another look. It seems they think the spots that showed up on the bone scan are inconsequential as they didn't light on on the MIBG scan. However, with neuroblastoma it is hard to think of any abnormality as nothing. Our power returned Thursday afternoon and life as we know it returned to normal. Unfortunately, for millions of people their lives will never be the same.
I will update again next week after the follow-up CT. We pray that you, your friends and family are all safe.
Monday, August 22, 2005 9:27 AM CDT
Davis started kindergarten last week!! He was soooo excited. He didn't even want me to walk him to his classroom on the first day. He had his big new backpack courtsey of his Aunt Debbie and he was ready to go. We are so excited for him. He keeps asking when he is going to get homework! After almost an entire year of intense and difficult treatment, he is finally able to act like a normal little boy again. I met with his teacher, the principal, assistant principal, counselor and the school nurse last week to discuss Davis' health and immune system issues. Everyone at the school has been great and they are very willing to do whatever is necessary in order to meet any special needs that Davis may have. We just pray that he will stay happy and healthy and be able to enjoy going to school and making new friends.
On the medical front, Davis started his third round of cis-retinoic acid, but only at 1/2 of the dosage. Unfortunately even at 1/2 of his dosage, he developed hypercalcemia again and had to have a couple of days of treatment to get it under control. After discussing this with his doctors, it was decided that he will discontinue the cis-retinoic acid treatment as the short-term risks of hypercalcemia are greater than the possible long-term benefits of finishing the treatment. Since this was the last line of treatment in his protocol, he is officially "off treatment." He is scheduled for tests again next week to make sure there is still no evidence of disease. He will continue to be monitored and tested every few months for a while, but we hope and pray that our days of daily and weekly clinic visits are behind us. Everyone please continue to pray clean scans and bone marrow!!
I'm posting a new picture of Davis taken on the first day of school in carpool. Unfortunately, I wasn't able to take as many pictures as I would have liked, because Davis had been playing photographer with the digital camera and used all of the memory. We had some wonderful pictures of the television set, Davis' feet, the furniture, etc. I was frantically deleting photos from memory while in the car pool line and I was lucky to get the few that I got! I'm also posting a picture taken at our first big outing since transplant at Visionland last week with our friends Rome and Olivia! Davis had a great time and rode all the rides and waterslides! It was a really fun day.
Make sure to check back frequently for school updates and for the results of his next round of tests! Thanks to everyone for your continued prayers, kindness and support!!
Sheri
Monday, July 25, 2005 12:02 AM CDT
Sorry so long since the last update, but time does get away from you and the long days of summer seem to run together at times. A lot has happened, but I will try and keep it brief. First of all, the benefit was a huge success and a lot of fun. There was a great article in last Tuesday's The Birmingham News with some great pictures of Davis.
Davis started his second round of cis-retinoic acid and, once again, didn't tolerate it very well. He developed hypercalcemia mid-way through the cycle and had to discontinue the medication. We were at clinic most of that week for treatment to get that problem resolved. He is scheduled to start round three next Monday, but he will only take 1/2 of his usual dosage. He will be checked every other day to see if he is tolerating the lower dosage. He still has frequent headaches and some leg pain, even while off the medication, and that worries us. He will have scans again after the third round of cis-retinoic acid and we pray every day that he has no evidence of disease. School is scheduled to start in a couple of weeks and we are still unsure if Davis will be able to start school. I hope to meet with the school counselor and his teacher in the next couple of weeks to discuss any options that we may have. We are assuming at this point that Davis is finally rid of the c.diff bacteria. He was tested last week and we haven't heard anything from that test so we are assuming that no news is good news.
We hope that everyone is having a great summer. Thanks for checking on us!
The Hartsell Family
Wednesday, June 29, 2005 2:22 PM CDT
Hi, everyone!
Davis is feeling much, much better. Unfortunately, we are scheduled to start another round of the cis-retinoic acid on Monday. This time, at least, we will be more prepared. He finished his vancomycin and we will find out in the next day or so if he is rid of the c.diff. We have had a really good week. Macy has stayed home a couple of days to play with Davis since he is feeling better. We go back to Clinic tomorrow and are scheduled for some testing. He will have an echocardiogram to check his heart and also he will have his hearing checked again. When he had his pre-transplant testing, he had already some hearing loss from the chemotherapy. Michael and I feel that he has had some additional hearing loss since then, and we will find that out tomorrow. They will also check counts, but we are not expecting those to be down.
The Benefit is Friday night and we are very excited about the event. The response to the benefit has been overwhelming and we are very grateful to everyone who has worked so hard to make this event possible. If anyone would like information on Davis' benefit, you can go to www.davishartsell.com and there is a benefit link there. It will give you all the details.
We will update next week with Davis' test results and give all the fun details of the Benefit event.
Take care!
Tuesday, June 21, 2005 9:59 AM CDT
Hi, everyone,
Davis just finished his first 14-day round of cis-retinioc acid. I wish I could say it went pretty smoothly, but it didn't. He has really been sick. He is very weak and has been complaining of a lot of pain in his legs, back and head. We've been giving him Tylenol with codeine for his pain. He hasn't been eating and has lost back down to 32 pounds again. His skin is very dry and peeling, his lips are swollen and cracked and his eyes are very red and irritated. The doctors think this is all a result of the cis-retinioc acid. If he is not better by Wednesday, we will take him back in and I assume they will do some tests to find out what is going on. We also found out last week that he still has the c.diff infection. He is now on another 10 day round of antibiotics. This time it is oral vancomycin. This medicine is usually administered via IV, but he has to take it by mouth four times a day to get it into his gut more efficiently. Hopefully, this will clear up the infection and we will be done with c.diff for good. The good news is that his counts came up a little this week. Pray that they continue to come up as this means that his new marrow is beginning to work more efficiently.
Sunday, May 29, 2005 4:06 PM CDT
First of all, I want to mention a family in Illinois that we have been following since Davis' diagnosis. Jake Wideman was diagnosed with neuroblastoma in March 2004 and was declared NED in January 2005. Unfortunately, Jake relapsed in March and lost his battle with this merciless disease on May 27. We were deeply saddened by this news and cannot imagine the pain this family is suffering. Please remember this family in your prayers as they go through this very difficult time. Jake's website is www.justforjake.com. It seems that we have heard about a lot of relapses lately, but that is what this disease is known for.
On another note, I am writing another update from the Stem Cell Unit. Davis was released last Monday to continue his IV antibiotics at home. He felt really good for a few days, but on Friday he started feeling puny again. He continued to feel bad on Saturday hanging onto a low-grade fever. Early this morning, his temp hit 102 and it was time to bring him in. He was admitted and blood cultures drawn again. It seems that the bacteria in his central line last week was identified as being of the clostridium species. This is one of the same species that caused the C.diff infection that caused him such great pain and discomfort in his gut while in transplant. The clostridium bacteria can cause several nasty ailments and his cultures were sent to the State lab last week for further identification. Until then, the doctors did not want to take any chances and have decided to remove his central line. This can be a good thing (no more dressing changes, daily line flushing, swimming this summer, etc.) or bad (needle sticks every time they have to check his counts, needle sticks and more needle sticks). Surgery was consulted about removing the line and it was decided that they could remove the line right here in his room! Yep! No need for the OR or anesthesia, just a little numbing cream and a dose of morphine and he will be fine! The surgeon came right in, gave the morphine about 30 second to take effect and proceeded to cut the sutures and started tugging on Davis' line. After several minutes of pure torture, he proclaimed that he could not remove the line in the room and needed to do so in the OR. Imagine that?? Anyway, they are trying to work him in today so he cannot have anything to eat or drink until they know if they are going to be able to get him in the OR (it's now 4:00 p.m.) Also, his platelets are 19,000 and he is going to have to have some platelets before they can do the procedure. Since the surgeon pulled his line at least half-way out, they can no longer use it. So they had to insert a peripheral IV in his arm in order to give him the platelets he needs, something he hasn't had to have in a long time. Needless to say, he was not very happy about it, either. Right now he isn't seeing the bright side of no longer having the central line. Hopefully, we can get the line out and get out of here tomorrow to continue our antibiotics at home by mouth.
One more thing ... all of Davis' post-transplant tests were clear!!! He has no evidence of disease. Praise God!! We have an appointment on Tuesday back in Clinic 8 to discuss where we go from here and to get him started on the cis-retionic acid.
Sunday, May 22, 2005 2:48 PM CDT
Here we are again. Room 662 in the Stem Cell Unit. Davis woke up Friday night with a really high fever, so here we are. Thankfully, they have been able to identify the source of the fever and are treating it. He has an infection in his central line. We have been very fortunate thus far about line infections, I guess we were due one. Hopefully, we may get to go home tomorrow if there is no more fever. They will send us home on IV antibiotics, but that is better than staying here for another few days. Davis finished his post-transplant testing last week. We are now just waiting on the results. We are very confident that he will be NED. He will then start his cis-Retinoic acid treatments, which will just be oral medication taken at home for the next six months. We are so glad to be ending this part of his treatment. He is so ready to be a normal kid again. We registered him for kindergarten last week and he is very excited about starting school next year. He has really missed attending pre-school this year. Hopefully, he will also be able to get his cental line out sometime before summer is over and will be able to go swimming. There are several families here at Children's going through very difficult times, please remember all of these families in your prayers.
Friday, May 6, 2005 10:24 AM CDT
Hi, everyone!
I haven't been able to update lately because of the move. Our computer is in a box somewhere. I don't know if we will ever find all of our belongings again. We are all happy to be in one house even though there are still lots of things unfinished. Only one bathroom is fully functional right now. Davis is doing pretty well. He is still on TPN, but his weight is finally starting to come up some (he's gained a pound!). Radiation will wrap up next week. That has really been pretty easy for us. It has made him a little sick, but not too bad. We will make a decision in the next week or so about the antibody study being conducted here at Children's and he will have his full series of post-transplant tests next week. We are very confident that all of those tests will show no evidence of disease (NED). The benefit plans are rolling right along and invitations will be mailed in the next few weeks. Please visit www.davishartsell.com for more information on the benefit. I will also be updating again once we get Davis' test results back. Please pray for good results!
Thursday, April 21, 2005 11:45 AM CDT
It has been a while since I updated this site. It was much easier to update it daily when you are confined to a hospital room 24 hours a day! I am grateful to say that we are no longer confined to the hospital, but we were released home on Saturday, April 9. Davis did get to celebrate his birthday here at home. It was very low-key, but it was great to have all five of us at home together. He did not, however, go without any presents! He was very blessed with gifts and even though all of the kids' toys are packed and moved to the new house, he has a huge tub of new presents that has kept all three of them very busy. Davis is doing very well. He was sent home on TPN because he wasn't eating. He continues to be on TPN, but we are beginning to taper him off some as his appetite returns. We still have to go to clinic on a regular basis and he is still getting platelets quite often. He received a unit of red blood cells yesterday, his first since he was discharged and we were also very excited to see it was from a directed donor! We start radiation next week. I'm not sure what to expect from that, but we have been told that it shouldn't be too bad. Macy is sick and at home today. I am trying my best to keep them apart and am keeping the clorox wipes close by at all times. Will is doing good and went on a field trip today to the McWane Center.
The house still isn't finished. I am so ready to get moved in and settled. Next weekend will be the final moving date. We were held up this week due to the hardwood floors not being finished.
We also have some information about a benefit that some good friends have put together for Davis. It will be on July 1 at the Donnelly House. More information will be available soon on Davis' other web site: www.davishartsell.com. Please check it out, or post a message in the guestbook here or you can e-mail me at sehartsell@hotmail.com for more information.
Wednesday, April 6, 2005 8:33 PM CDT
Day +15. Davis still doesn't want to eat or drink. They say it's very normal and they don't force them to eat if they do not want to. They would like for them to be eating better, but it doesn't sound like that will hold him up from going home on Friday. Only something really bad happening (like spiking another fever) would prevent him from being discharged at this point. He still doesn't want to swallow and continues to hold his spit in his mouth for long periods of time. He is taking his oral meds pretty well, but does seem to still be somewhat nauseated. I talked to Dr. Sande today and she agreed to start him back on Zofran (his anti-nausea medicine) to see if that will help him feel like eating again. I think at this point, he just wants to be left alone. He is so tired of people poking, proding and just generally bothering him. Hopefully, his mood will improve when we get home. Although, he will then have Will and Macy to contend with. Will told me in the car this morning that when Davis gets home, that he is going to do anything that Davis asks him to do. He really misses Davis a lot. I'm just ready to get out of the hospital. They days just seem to get longer and longer. Our lives are still going to be very chaotic during the next couple of weeks until all the house stuff is finished, but at least we will be out of here. I know our families will be so glad when this is over, too. They have been wonderful and we are so blessed to have family close by who are willing to give up so much to help us. We really do have so much to be thankful for.
Tuesday, April 5, 2005 10:12 AM CDT
Day +14 - Isn't it great when you really don't have too much to write about! Davis is really doing well -- improving every day. Cindy, our nurse practitioner, said today that going home on Friday is a likely possibility! Now my biggest worry is going to be getting the house ready for him to come home. We have really let it go lately, with all the packing and moving going on. We suspended the maid until we get moved into the new house and we were just going to give it a good cleaning after everything was moved out. Anyway ... Davis' WBC today is around 1,800. His ANC yesterday was 826 - it only has to be 500 to go home. He was able to get out of the room without a mask. He played for several hours with Jennifer and with his Aunt Debbie, who very unselfishly offered to spend the night here Sunday night. He was so tired last night that he was out by 6:00 p.m. He was really mad at me when I had to wake him up to take his bath and perform the other nightly rituals. He finished getting a unit of blood around 6:00 and he seemed to have a slight reaction, with some kind of funky-looking rash on his chest. Once again, they decided it would be a good idea to give him lasix during the middle of the night and no one told me they had given it to him. Needless to say, we had a mess to clean up in the middle of the night. Other than than, he had a good night.
Sunday, April 3, 2005 9:31 AM CDT
Day 12. Today I am writing the update that I have been hoping to write for the past week. Davis is much better. We are nearing the end of this very difficult part of our journey down the neuroblastoma road. WBC today is 660 ... no going back now. He has been smiling and talking some. He even sat at the computer with Dr. Nichole last night and played a game. They have taken him off all but one antibiotic, the one for his c.diff and intestional issues, which continue to bother him. He is off isolation so no more yellow gowns and gloves. The fentanyl patch is coming off today, so they will not decrease his morphine again until tomorrow. His bleeding is much better. He continues to spit up mucous, but it is no longer bloody. No more bloody stools, just the evidence of old blood. Now we just need to get him up and get him moving around. He has been in the bed now for at least 13 days straight. We carry him to the bathtub and back and even when he gets weighed, we hold him while they take a weight. He has hardly put any weight on his little legs in two weeks. Yesterday he had one bite of grits and a few sips of chocolate milk and coke, so we are making progress. Let's just pray for no set backs.
On the home front, yesterday was a big day at the work site. The members and wives of the Birmingham Rugby Team turned out in force to help us get the house ready. I think they were expecting things to be a little more "finished" seeing as how closing date is next Friday. It has become very obvious that there is no way we will be able to move in. The guys worked really hard to get the basement all cleaned and sanitized so that we can start moving furniture in. They also helped us get the yard cleaned up and I'm sure the neighbors are happy about that, too. The girls were a huge help painting trim and woodwork. We are so very grateful for everyone's willingness give up your Saturday to help us out.
Friday, April 1, 2005 9:09 AM CST
Day +10. Well, we are hanging in there. Maybe a little better. The diarrhea is better. Still crying with stomach and back pain, but it seems to be some better. Vomited more blood this morning. White count is back down to 190. Not what we wanted to hear. His weight was up last night, so they think he is holding fluid again. His face is pretty puffy this morning. Probably more lasix today to take off excess fluid so it won't accumulate in his lungs. Today is my Dad's birthday. Happy Birthday, Daddy! I love you!
Thursday, March 31, 2005 8:58 AM CST
Good morning. Day +9 now. He isn't much better, but he isn't worse, either. White count is 370 so at least it didn't go back down. They say 370 really isn't any different from 300, but we'll take what we can get. More bleeding today. Vomiting more blood and more blood in stool. Also another nose bleed. More platelets today. They have decided his threshold is 40 for platelets and try to keep his level above that to prevent bleeding. When he first started bleeding, they told me that his platelet level was fine at 40 and they didn't transfuse until around 10. I tried to tell them that he wouldn't stop bleeding with a platelet level of 40. I guess they decided I wasn't crazy afterall. Still on Morphine and will get a new fentanyl patch today - hopefully, his last one (they last for three days). Will start trying to wean him off the morphine soon. Dr. said today that he may require some methadone after being on narcotics for so long. Just something else to worry about. Will and Macy are good. Macy actually wore big girl panties to school today (it's the small things that keep you going!) We'll see how she does. It was good to spend a couple of nights at home with them. They will check counts again this afternoon. Will update again soon. Thank to everyone for checking on us.
Wednesday, March 30, 2005 2:04 PM CST
Day 7 - I keep hoping that my next update will be the one where I say, he's over the hump, but not today. Counts back down today. More platelets needed today due to bleeding from mucositis in his gut. More bloody diarhhea and more severe belly and back pain. More fevers, but not quite as high. Were told today his blood is positive for the adneovirus, so they are starting him on an anti-viral medication. He also has to take another medication to protect his kidneys both before and after he receives the anti-viral. He's spitting up bits of skin and tissue from the lining of his mouth and throat.
Day 8 - Maybe today is the turning point. His counts are
up to 300!!! I got to go home yesterday afternoon and I do think he looks a little better than he did yesterday when I left. I pray that he is beginning to turn the corner. I know we won't be home for a while, but hopefully, the worst is over. It was great to see Macy and Will last night. I get to spend tonight at home, too. Macy was so happy to see me yesterday. She held my face in her little hands and and said, "Hi, Mommy!" and kissed and hugged me. Then she said, "Davis at hospital?" She continued to ask me throughout the night where Davis was. The weather was so nice yesterday and we spent the remainder of the afternoon outside playing and visiting with the neighbors. Good to act semi-normal for a few hours. Went to the new house and painted for a few hours before returning to the hospital so that Mike could go to a meeting. Hopefully, my next update will be better.
Monday, March 28, 2005 1:19 PM CST
Yesterday was Easter, but it didnt feel like it. Christ is risen. He is risen, Indeed! It was another hard day for Davis. He spiked another fever up to about 104 and his heart rate was up - 180's to 190's for several hours. Couldn't get his fever down with Tylenol, so had to give him Toradol. This medication is in the same family as ibuprophen and works great at helping to reduce his fever and it also really helps alleviate his pain. Unfortunately, it is quite dangerous to give it to him due to it inhibits platelet funtion. He is already at high risk of bleeding complications due to his low platelets. He was feeling some better yesterday afternoon and even colored some. Dr. Nichole is back from her vacation and visited with him for a little while. He was really happy to see her. During the night last night, his fever crept back up. More blood cultures. He is really hurting today with his belly and his diarrhea seems to be worse today. They went back up on his morphine, but will continue to watch his breathing very carefully. White count was up in the 100's today, but they say not to get too hopeful. I still think he is considered at zero due to no neutrophils in his blood. Also about to get a unit of blood - the second unit so far. Had four or five units of platelets already. Day +6 today. Not getting any easier. More worried about him than ever. I miss Will and Macy terribly. Haven't seen them in several days. I cried while talking to Will on the phone yesterday. I hope I didn't scare him. Michael and I see each other in passing, haven't had any time together in a while. He is working really hard on the house and moving. He hasn't stayed here in a few nights due to he thought he was coming down with something. I may get to go home tomorrow night. Pray for a better day tomorrow.
Saturday, March 26, 2005 5:50 PM CST
Hi, again. Second entry today. It is really funny how things can take a turn so quickly. Davis seemed to be having a little better day today, but he is now having a little trouble breathing and is also running a temp again. The breathing problem is probably a result of high doses of morphine, which they had to decrease so that he continues to breath. Since he has spiked another fever, they are also going to put him on yet another medication to cover fungal infections. He's already on just about every antibiotic there is to cover just about any kind of bacteria you can imagine. I was so arrogant when we came into stem cell thinking that all of these bad things were not going to happen to Davis. Afterall, they also told us all the bad things would probably happen to him during his chemotherapy treatments. We breezed right through those, for the most part. Not near the complications that they told us we would have. I feel so helpless. He is now spitting up bloody mucous that contains bits of skin from what used to be the lining of his mouth and throat. He cries out in pain and there is absolutely nothing I can do for him. I pray for this to be over soon.
Saturday, March 26, 2005 2:55 PM CST
This is my first caringbridge journal entry. We are Day +4 of Davis' stem cell transplant. It has been a rough few days. Counts today are: WBC 0.09, RBC 2.90, Hct 24.2, platelets 38. Still has severe mucositis, but seems to be a little more comfortable today. No high fevers today. He is drinking some. He told me today that the more he drinks the quicker he gets to go home. Will update more tomorrow.
Sheri
Friday, March 25, 2005 8:01 PM CST
Davis Hartsell was diagnosed with Stage IV, High Risk Neuroblastoma in late September, 2004. This journal will pick up on Day 4 of his stem cell transplant.
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