Journal

January 21, 2008 at 09:03 PM EST

Dear Friends,

This site has been silent for a while now. It pales in comparison to the deafening silence that now fills our home...like a concert when the music stops, we long for an encore. The day that Grace Lindsay died, so much of what was musical and beautiful in our lives ceased to exist. The "music" died. For so long Crystal and I wished only that she would be at peace...be through suffering. We were sure that we were stronger than her and that we would be "okay" if she were healed in the arms of God. Now I am not so sure. I think she was the stronger one. I think this because now we are here without her...weak, frail, and longing for healing. We would gladly give all that we have and all that we are to see her fighting again, inspiring and giving hope to so many, including us. We want hope back, but we really want her back.

It is ridiculous, of course, to ask for that. Not only because it is impossible, but because, if possible, our princess would not ever want to leave a place of such peace and perfection to return to an earth filled with pain and sorrow....even to be with us. So, we don't ask for that. We simply ask for peace and wisdom, neither of which has come to us from a burning bush or lightning bolt yet....but we are still hoping.

We must share, though, that we have found peace in the fact that we are confident God does not give kids cancer. We do not believe that Grace, or Lilly, or Chloe, or Sydney, or Marissa, or Codey, or Kai, or Jack, or Shannon, or Gustavo, or Max, or Kieran, or Zach, or Cooper, or Elliot, or Leo, or Paris are "given" cancer. We do not believe that their pain and suffering is all part of some celestial chess match...that God afflicts these beautiful, strong children with a devastating disease, that tortures them and tears apart their family, to accomplish some greater goal. We believe that God weeps when these random cells choose death over life and pain over peace, just as he weeps when unstable people murder innocent families, or mistreated dogs maul grandmothers. We know in our hearts that God does not make those terrible things happen. He is a loving God whose heart aches with us as we suffer the pain that goes along with the freedom to choose. The freedom to choose right from wrong, to love or to turn our backs, to praise or to persecute. The freedom to love and worship Him, not because we have to, but because we want to.

Does this mean that, because it isn’t part of God’s master plan, no good can come from Grace's death? Absolutely not. In fact, that is where we see God. We see him in the hearts, minds and souls of people who choose to open their doors, arms, and wallets to help these kids. We see his hand in the dedication of parents who choose to try and conquer a disease that has taken the life of their baby. We choose, and we are committed, to make something good come from the death of our daughter, because we refuse to let her die for nothing… and we long to see a bright light, where it is now dark.

We pray for peace for you, our friends entrenched in battle. We don’t write this because we wish to “preach”. We just don’t want you to feel distant from Him… we have been there. Know that God loves you, he weeps with you, and he certainly did not do this to your children.

Truly,

The Oughtons

October 30, 2007 at 11:12 AM EDT

Dear Friends and Family,

We wanted to thank everyone so much for your messages of support. It is comforting to know how many people have prayed and continue to pray for our family.

We have received many calls and emails asking about the arrangements. Please check www.SaveGrace.com to get all of the information regarding the services.

Many thanks,

The Oughtons

October 29, 2007 at 09:45 AM EDT

Dear Friends and Family,

We can not believe that, after all the fighting Grace has done over the last two years, we must write what follows.

At 6:23 this morning, October 29th 2007, Grace Lindsay Oughton earned her wings and is at peace in the arms of the Lord. She fought much harder than we could have and we are so very proud of her. She was an inspiration to us and to so many others. She is our princess and our hero.

Fly Butterfly...Fly.

October 18, 2007 at 12:38 AM EDT
Dear Friends and Family,

We know it has been some time since the last update. In some part, this is because we were so tied up with the LR Campaign, but predominantly, it was because everything has been so up in the air regarding Grace's condition and prognosis. We were instructed not to jump to any conclusions, but the conclusions that we feared appear to have become a reality.

During Grace's admission, a follow-up CT scan showed evidence of suspicious soft tissue areas, that appeared consistent with metastatic disease, in multiple locations in Grace's abdomen. Further investigation confirmed it's presence in and around multiple organs. It is now assumed that Grace has metastatic disease on her liver, right kidney, and her aorta. One doctor's statement that "her abdomen is a mess" fits it best. Since these findings, Grace's liver has begun to fail again. There are few options for soft-tissue disease that progresses during chemotherapy, but with Grace's liver condition and nutritional status, there are no options at all at this point.

We are home now. We have come to the realization that this disease is going to take our daughter from us. The small chance that her liver failure and nutritional status will turn around enough to administer a chemotherapy, whose goal is only to try and stabilize the disease, is not even comforting anymore. We don't want to torture our little angel anymore with no real hope of cure. If Grace is going to die of cancer, we want her to die where she is comfortable...in our home, in our bed.

We appreciate so much the calls and emails of support and prayers. We would ask that you, who have supported us so fervently, would now respect that our family time is so precious, and that any communication during this extremely difficult and private time be via email. Thank you so much for all you have done for our family. Please pray now for a painless passing, guidance, and strength for our family to endure.

The Oughtons

September 18, 2007 at 07:07 PM EDT

Hello All,

Well Grace continues to be hospitalized her counts remain very low. she is receiving GCSF shots daily to help stimulate her marrow, and platelets at least once a day as well. She is hanging tough receiving antibiotics, nebulizer treatments, and some feeds via NG tube. her mouth sores seem to be healing so hopefully her counts will be climbing soon.
We have been on a pretty big roller coaster the past few days, so here is basically what has transpired on Sept. 6th Grace had a ct scan that showed that the hydronephrosis was worse than the previous scan, so the stent was placed on Sept. 11th. Friday Dr. M. told me they found malignant cells in the sample Dr. L. took from the surgery. He stated that if it were neuroblastoma the team has never seen it there, but we need to make sure that we are still dealing with NB and not another malignancy. WHAT!!! I know, see I told you it has been a roller coaster ride. So Saturday Dr. L. told me he saw something on the CT scan near Graces right kidney he was surprised that the NB team had not discussed this finding with us. Well the computer report I had stated nothing about this finding. So yesterday I asked for another print out, well there was an addendum added on Sept. 13th stating of a suspicious spot that may be tumor recurrence. Dr. Kushner also stopped in yesterday he stated we should not jump to conclusions, we should see wait the scans show next week he also reminded me that he MIBG was clean in that area prior to chemo and he believes her skull has responded well to both chemo and radiation.
So we ask you to pray for Graces counts to climb in the next few days.
Pray that all the disease is gone from Graces body.
Pray for positive scan and bone marrow results next week.
Pray for strength mentally, physically, and spiritually for all of us, but especially for Grace.

Keep believing,
The Oughtons

September 12, 2007 at 11:23 PM EDT

Hello All,

Grace had a temporary central line placement in the procedure room today. She started vomiting while sedated Dr.L decided it was not safe to proceed with radiation today so we will finish our last day in the morning. The doctors wanted to keep Grace in the hospital one more night to watch for signs of aspiration just in case any of the vomit went into her lungs. We have also begun nebulizer treatments for her cough. She is receiving blood and platlets tonight. Her bilirubin is down by half since yesterday. Grace continues to have low counts so we are watching her carefully. Please pray for her bilirubin to normalize and for liver enzymes to stay stable. Pray for her lungs to be clear and show no signs of pneumonia,pray for her white counts to begin recovering from this lastest round of chemo. Pray for the safety of everyone riding and driving on the loneliest road, they are having an impact everywhere they go (God is Good)!!But mostly pray for the wives and children who continue treatment while their fathers are gone. Crystal is again spending the night in the hospital and I ask for prayer for God to renew her strength and allow her to sleep.

Thanks in advance for your prayers, GiGi

September 11, 2007 at 04:06 AM EDT

Good Morning,

Sorry it has taken so long...Grace is out of surgery she is in the step down unit; they are unable to draw blood from her port. She has a NG tube instead of a G tube due to her counts being low. The Doctors are concerned about her labs. Please continue to pray for Grace, that they will be able to start drawing blood from her port. We will update again when we know more.

Thanks,
Bethanie

September 10, 2007 at 02:21 PM EDT

Good Afternoon,

We are asking for some prayer today as Grace will be undergoing surgery to have a stint placed from her kidney to her bladder and the doctors will also be placing a G tube, she will remain in-patient for at least a week. We will do our best to keep everyone posted on her status. Please pray that Grace will remain strong and recover quickly.

Love,
Aunt Fuffy (Bethanie) and GIGI

September 08, 2007 at 09:57 PM EDT

Good Evening,

I am writing you from Lincoln Nebraska. We are now 24+ hours into the "commute" to California and the reality has set in as to how long this trip really takes. So far, with the exception of a flat on the trailer, the trip has been uneventful. We certainly appreciate all of the emails and calls of support for the trip. Fundraising is going well also. A new means of donating has surfaced in the form of very pretty bracelets. $20 from the sale of each bracelet goes to the LR Campaign. Many have already been sold and we have already received a check from their sale. You can see them at www.sydlets.com.

Grace finished up her chemo this morning. Crystal says that she is holding her own, but continues to vomit and her appetite is mediocre at best. Early this week Grace vomitted bile which had us worried that there were further complications of the obstruction. After x-rays, ct scans, and a night in urgent care, Grace's digestive tract received a clean bill of health. Her hepatic system was another story. The hydronephrosis seems to linger and is an area of concern for the doctors, which could explain her nausea, poor appetite, and generally "icky" feeling. She will have a flow test early next week and, if poor flow is noted, Grace will have a surgery to place stints in her right ureter. We will update after we have some news. Grace continues this week with her last 3 sessions of radiation to her skull.

Please pray for Grace's good health, Mom and Landon's sanity, and a miraculous shortening of Interstate 80.

The Oughtons

September 02, 2007 at 02:36 AM EDT

Good Early Morning (why am I up?!?!),

We are very sorry that we haven't updated in some time. We have been extremely busy trying to prepare physically, logistically, and emotionally for the trip that lies ahead. The Loneliest Road Campaign has taken quite a bit more time that we anticipated (well, I anticipated anyway...Crystal seems to know this stuff long before I do). Although it has taken a lot of time, it is picking up steam and we are constantly taking calls from the media regarding the event and, more importantly, the disease. Please continue to spread the word about this very important campaign. The site, www.loneliestroad.org, is being updated on a daily basis to reflect the most recent developments.

Since we last spoke, so many things have happened. The most tragic was the loss of our very good friend Lillie. We spoke of her rapid progression in our updates. Last week, neuroblastoma took a sweet and beautiful little girl away from her family. It wasn't long ago that Lillie was running around the playroom laughing, dancing, and fighting with her sister, Hannah, about which one of them got to marry Landon. This disease is so terrible, but she is free. Please pray for her family and friends as they, and we, try to cope with her loss.

Grace responded very well to the chemotherapy. In fact, she was like an entirely different child. It is rare that a child will thrive on chemotherapy, but Grace definitely dances to the beat of her own drum. She had more energy, was happier, and even danced for the first time in a long time. She walked into the dining room at the RMH and was greeted with the applause of people who had never seen her walk before....it had been that long. She seemed to weather the diarrhea and nausea, caused by the chemo, very well. Grace has been admitted twice, so far, during the recovery phase for fevers, but both admissions were short (3-4 day) stays.

Grace started electron beam radiation to her skull on August 20th and her daily routine now includes sedation at 0730 every weekday morning and 5 minutes of radiation to the site of the "lump". She made it through the first week unscathed. This past week, however, she began with some pretty intense nausea and vomiting, which has been very difficult to control. Some other families, who have been through long rounds of local radiation, told us that the nausea will begin around this time. They aren't sure if it is because of the radiation, or if it is a result of daily sedation. Whatever the reason, it has returned Grace to a much more "clingy" and antisocial state. We are keeping in our mind that "this too shall pass" and we are very encouraged by the glimpse of Grace's true personality, a sight we haven't seen in months and months.

The plan was to start Grace's second round of chemo on Monday August 27th, but her counts had not yet recovered from this "mild" chemo. She is tentatively scheduled to begin her next round on Tuesday the 4th. Please pray for good counts. She will continue daily radiation until September 12th. The bone marrow biopsies showed a "few isolated [neuroblastoma] cells" in both posterior samples. This is the first time they have found any disease in Grace's marrow, but they are telling us that we will stay this course of treatment and reassess two weeks after the radiation is complete. This does not necessarily mean that the disease progressed, this is just the first time they found it. Early in 2006, we were told that these samples are like shining a flashlight in a dark auditorium. You can only look at the dust you see in the beam of light, but there could be so much there that you can’t see. It is a diagnostic tool, not the definitive test of progression. We take comfort in the fact that the lump has completely vanished.

Thanks for your continued support. We couldn’t do this without your prayers and messages of encouragement. We will write again soon.

The Oughtons

August 13, 2007 at 06:37 AM EDT

Good Early Morning,

This week has really been a whirlwind of events and 5 AM seems to be the only time we really have to sit and quietly formulate an update.

On Wednesday, the second day of our chemotherapy, Grace spiked a fever of 39.2. The nursing staff at the Pediatric Day Hospital drew blood cultures and watched as her temperature normalized on its own. We really did not expect anything to come of it. Unfortunately, within 24 hours, her culture grew a gram-positive cocci, which forced an admission despite the absence of any other symptoms. We were taken over to the in-patient side where we began a regimen of ceftriaxone and vancomycin. The culture ultimately grew enterococci that responded to nothing other than vancomycin. Ironically, it appears to be the same bacterium that was present in her urine weeks ago. The infection seems to have moved from her urinary tract, to her kidneys, and now to her blood. This time, we feel like they have developed a plan to effectively treat it by putting her on a 14-day course of vancomycin. We hope that this will rid her of all traces of these bacteria and eliminate the need for further admissions associated with this infection.

After a couple of days of observation while on the antibiotic (to monitor peaks and troughs), we were discharged on Saturday and headed back to the RMH. We completed the first cycle of chemotherapy on Saturday morning, so we will sit back and watch the effects of this chemo. Grace has never received this combination of drugs before and we are curious how she will respond. We have seen a number of kids get this regimen with such a wide variety of side effects. Some kids will continue to grow hair and never drop their blood counts, while others are bald and require frequent transfusions. Regardless of the side effects, the drugs seem to be very effective in arresting the progression of the disease and, in most cases, ridding the body of the cells. We are please with the way it has worked on the bump on Grace’s head. Where before it was the size of a half of a pea, now it is almost not palpable. It is definitely an advantage, both in the detection of a recurrence and in the treatment, for the tumor to be located in a place like this. It allows early identification of the relapse and an immediate indicator of how the chemo is working. From our layman’s point of view, this chemo has been very effective in reducing the size of the new growth to almost nil.

We still do not have the bone marrow results back yet. We are disappointed that we have waited so long to get the results of a “rushed” sample and we are certainly glad that we didn’t wait on these to initiate treatment. We would be pulling out hair out at this point. Please continue to pray that these biopsies show no disease.

We have a 0930 appointment with the radiation oncologist this morning and we will know when Grace is to start radiation. We will them be able to determine when we will get to come home. We are missing “normal” life.

The Loneliest Road Campaign is inching ever closer. We are just on the cusp of breaking the $10,000 mark. We have come so far, but we still have such mountains to climb, both literally and figuratively. Think hard about who you know who could make a difference and spread the word. This event became more personal last week. This is a therapy that, if already developed, would most likely be Grace’s next step. Unfortunately, we struggle to get funding to develop drugs like this. We can all do this together. We can make this happen. We might not be able to move mountain, but we sure as heck can ride over them.

As always, we are so thankful to have friends who are so supportive and caring. Please know that, while we are never in a place long enough to make a list and send out the thousands of “thank you” cards that we owe you, we truly, truly appreciate the support you have given.

Sincerely,

The Oughtons

August 09, 2007 at 12:29 AM EDT

Good evening,

On Tuesday, after the bone marrow biopsies, we met with the team and we were briefed on the plan for Grace's continued care. Grace will receive a combination of chemotherapy and radiation to eliminate this recurrence. We were very happy that Dr. Kushner moved so quickly with the plan's development and implementation. We began the regimen of Irenotecan and Temador the same day. We have not met with the radiation oncologist regarding the details of the radiation therapy. We hope to do so as soon as possible, but we have heard that she is on vacation. Dr. Kushner expects to give a minimum of 4 round of the chemotherapy and we will reassess with scans/biopsies two weeks after the radiation is completed.... whenever that is.

Grace's "spunk" has returned with the first infusion of chemotherapy. It was interesting to see her become more interactive and feisty even as the chemo started dripping in. It was nice to see that fight back in her, but we are confused about why she is more energetic and spunky on chemo. We pray that the "fight" will continue and that the energy comes from her knowledge that we are killing the disease in her body.

This was a terrible week at the Ronald McDonald House. We have been surrounded by news of relapse, disease progression, and cessation of treatment. It is so frustrating that these doctors cannot figure out how to eliminate this disease and even more frustrating to see such a variety of responses, or lack thereof, to treatments. We have discussed with so many parents whether neuroblastoma is even a single cancer, or a category of many different ones. It doesn't seem logical to see such a variety of responses to therapy..... but what the heck do we know. We are so tired of watching these kids and their families suffer and we are devastated to watch some dear friends get news that their daughter may only have weeks as her disease progressed dramatically despite chemo and radiation. Please pray for Lillie and her family as they meet with the physicians tomorrow to determine their next step. Please pray that they will find peace in their decisions and that Lillie will be free of pain and fear. She is such a special girl and her family is remarkable.

The countdown to the Loneliest Road Campaign continues. We are so excited to see the interest in the project snowball, but we still need to spread the word. Looking at the hits on the site, it is obvious that the word is spreading exponentially, but our goal of one million hits is a lofty one. Our goal of two million dollars is loftier still. Please continue to spread the word. It is the knowledge of this disease and the suffering that it causes that will encourage people to give to this project, so that we may see a day when we can cure every child with neuroblastoma.

We thank you for your prayers and your tireless dedication to our family. We ask you to continue those prayers for Grace and for all of our friends who are fighting this disease....a list that would fill this page.

Sincerely,

The Oughtons

August 06, 2007 at 10:27 PM EDT

Dear Friends,

At 10:20 PM, we received a call from Dr. Kushner. The bump on Grace's head, not only lit up on the MIBG scan, but also showed up on the MRI. Grace braved the MRI without sedation and thankfully so, since it appears to have confirmed the presence of new cancer growth. According to Dr. Kushner, we will have bone marrow biopsies done tomorrow to find out if her marrow is involved and we will move on to treat this, at least initially, with radiation. After we have the biopsy results, Dr. Kushner will formulate a plan for the entire treatment.

While we are obviously not happy about this finding, we are happy that it appears to be only in one spot. Her abdomen was clear of cancer when Grace had her bowel obstruction surgery and the MIBG shows a clean scan, with the exception of this one spot.

We would like to ask for prayers for Grace, that she may be at peace. We would also ask that you pray for her marrow to be clean, that the treatment regimen ahead will be completely effective, and that we would achieve remission quickly and permanently.

We will write again when we have more information.

The Oughtons

August 04, 2007 at 11:16 AM EDT

Hello All
Grace's bump showed up on her MIBG scan but no other areas, so they sent her for a head Ct but nothing showed up. On monday she will have a MRI and we will start the third cycle of 3F8 . The Dr. thinks its possibly nothing but most likey something. We ask for prayers. Prayers for healing. Grace continues to be healing from the surgery and is enjoying being out of the hosiptal.We will update again soon. Pray,Pray,Pray.

August 01, 2007 at 11:22 PM EDT

Hello All,

Well we were discharged on Tuesday, after a little under two weeks in the hospital. We are starting to wonder if Grace achieves a full 365 days of admission time, will she get a scholarship or some kind of plaque. Really, can this girl get a break?

With the bowel obstruction repaired, Grace's tummy feeling much better, and a renewed confidence that cancer was not rearing its ugly head again, we are "looking forward" to our scheduled 3F8 on Monday the 6th. There are some issues that could change that, including some elevated liver enzymes and a mysterious bump on the top of Grace's head. A liver panel will be drawn tomorrow to evaluate the status of Grace's liver and titers and the team moved Grace's scans up to this Friday to ensure that the bump is nothing more than just that…. a bump. We ask for prayers that Grace's liver enzymes will normalize and that she will have clean scans on Friday. We thank you for your prayers.

We are very excited to announce that, on September 10th, Alec will be embarking on an amazing journey with four other fathers. They are leaving on their bicycles with a mission to raise awareness and funds for cutting edge treatments used to treat neuroblastoma. This journey will take them over 3700 miles, from Sacramento, CA to Washington, DC and will hopefully raise the funds necessary to move forward with these therapies. Our other goal is to tell people, from coast to coast, that thousands and thousands of children die from cancer each year and we are making little-to-no progress in developing new therapies. Please take a look at our site at http://www.loneliestroad.org and, if you are so inclined, tell everyone you know about this event.

As always, we are so very thankful that you choose to follow our journey and that you continue to send messages of love, support, and prayers. We are indebted to you for your steadfast support.

The Oughtons

July 27, 2007 at 09:59 AM EDT

Good Morning,

Grace has progressed nicely over the last couple of days. We were moved from the “POU” yesterday to a shared room on the inpatient side of the 9th floor. While she complains of pretty significant abdominal pain, she only required 1 mg of morphine in the last 10 hours. Her tummy is still very tender and she will lie on you, but don’t move an inch or you are getting smacked. She has become more “mobile” and will move around a bit on her own as well. Yesterday Grace made poop, which is what all of the doctors wanted to see. This indicates that her bowel is back moving in the right direction. They have clamped her NG tube (the tube that goes through her nose to her stomach), so they are relying on her digestive system to push everything along instead of helping it by constantly sucking the contents out of her tummy. They plan to remove the NG today if all is stable and will begin to let her drink clear liquids. This will allow her stomach to practice with something relatively easy to digest. She is currently getting PN and Lipids through her central line for nutrition and will most likely stay on that for a couple of days after we go “home” to make sure she gets a good balance while she is recovering. Her liver enzymes continue to look fabulous despite all of the meds she is getting.

Grace has had fevers on and off for the last couple of days, the highest of which was last night at 38.9 (or roughly 102). They are still considering these post-op fevers and they are making her comfortable with Tylenol. Please pray that these subside so that we can go home safely with no worries of infection.

We would like to ask for prayers for our good friend Lillie. Lillie has been through so much recently and the difficult news seems to keep coming to her parents and family. They have so many decisions to make and little time to make them; and all of them are decisions that a parent should never have to make. Please ask that God would make clear the direction they are supposed to go and that, whichever path they choose, it would result in healing of Lillie’s pain and cancer.

At certain times, when things like this happen, we are forced to look up and ask where God is in all of this. We know He is there, but what role is He playing? Does He direct this growth of tumors in the precious children’s bodies for His purpose, or does He help the body fight it. We have always heard things like, “God has a plan”, or “There is a greater purpose”, but sometimes it is impossible to remotely understand what that could possibly be. We trust God with Grace, but we just wish the purpose was clear.

Thanks again for your prayers,

The Oughtons

July 24, 2007 at 01:00 PM EDT

Good Afternoon,

To borrow some words from Becky, Chloe's Grandmother, "God is great!"

Grace went down for abdominal surgery at about 4:30 to find the reason for the bowel obstruction. Dr. Kayton, who works very closely with Dr. LaQuaglia, was the surgeon who went in looking. During the consent process, he explained the risks associated with this kind of surgery. He explained that he would have to go in through a different site than Grace's previous two surgeries and that the incision would be large since he needed to be able to visualize the bowel. He explained that there were different grades and types of blockages, some which can be rectified by straightening the bowel and others that require the removal of a segment of bowel. Should some bowel need removal, there would also be a risk that she would need an illiostomy bag that would need to remain in place for months. All of these possibilities were scary, but we knew she needed the surgery.

About two hours into the surgery, we received an update from Dr. Kayton who was still in the OR. He advised us that he had located the obstruction and was able to correct it by cutting some scar tissue that had essentially tied Grace's small intestine in a knot. He told us, at that point, that Grace would not need and illiostomy. After the four-hour surgery, we met with Dr. Kayton in the consult room. He was visibly pleased with the way the surgery had gone. He drew us a picture of how the intestines formed this knot and how he corrected it. He also told us that none of this appears to be associated with a tumor of any kind.... that this was not a result of relapse. He also told us that this obstruction would not have resolved itself and, without question, required surgery to rectify. Dr. Kayton also feels that this blockage is the reason that Grace has been losing weight, despite eating. All parts of the surgery went wonderfully, except when Grace pooped on the OR table (already...she works quickly).

Today Grace is recovering in the "POU", the Pediatric Observation Unit. She has pain, but is being medicated with morphine so that she can rest.

Grace put on her game face yesterday after Crystal told her what was going to happen. Crystal explained that they had found the reason that it was hard for her to eat and why her tummy hurt. She let her know that it would hurt, but in a couple of days she would feel much better than she did before the surgery. Grace tried to negotiate by telling Mommy, "I will go poop on the potty", in hopes that this would get her out of the operation. Crystal explained that Grace wasn't doing anything wrong, that it was not her fault, and that her tummy was blocked and needed to be cleared. Grace accepted this and never cried as the surgeons and anesthesiologists surrounded her before she was sedated. She handles all of this with amazing grace.

We will not receive 3F8 on Monday. The team wants to delay it one more week as not to complicate her condition. They feel comfortable that the delay will cause no ill effects. We are concerned, but trust their best judgment.

We thank you all for your prayers.

The Oughtons

July 23, 2007 at 04:14 PM EDT

As some of you may know, we have moved to MSKCC at the request of Grace's surgeon. Attempts to allow the obstruction to resolve itself have not been successful and they are taking her down right now for surgery. There are many complications that can arise from this procedure and we just wanted to ask that our friends pray for Grace as she must endure another painful and invasive operation. Please pray for the doctor that he may correct this problem with ease. Please pray that the fix will be simple and that he will not need to do anything more complicated than clear the bowel. Please pray that Jesus will hold Grace's hand, yet again, and keep her free from fear, pain, and infection. Thank you for your help.

The Oughtons

July 21, 2007 at 03:15 PM EDT

Good Afternoon,

Last night was eventful with an occlusion of the NG tube causing discomfort and increased distension of Graces abdomen. After determining that the occluded NG was the culprit, the tube was repositioned and they pulled 300 ccs out of her stomach relieving her distension. This did not come without a fight. Grace managed to wrestle her peripheral IV and Foley catheter loose during the match and almost managed overcome the three people holding her down to get rid of the NG as well. Her belly reduced in size dramatically after the successful repositioning.

The other concern came when reviewing Grace's AM labs and noting that her platelets were down over 100,000 from yesterday's to 46. Crystal demanded to see the doctor and they sent a repeat CBC. The repeat came back at 96. Don't ask us.... we have no idea. The new lab results made us a little more comfortable.

This morning we received a call from Dr. L, Grace's surgeon in NY. While on vacation, he checked his email and was concerned enough to call and ask some questions. He is very concerned about the obstruction and wants to do surgery to rectify it. He did not seem enthusiastic about the progress we were making here and called the attending oncologist at Fairfax requesting that we be transferred to MSKCC. So, we are awaiting an aero-medical transport to pick us up at Fairfax and take us to MSKCC. The surgeons are expecting us there. We are scheduled to arrive around 6 PM.

Please continue to pray for a relatively non-invasive solution. We will update again after our consult with the surgeons.

The Oughtons

July 20, 2007 at 05:40 PM EDT

Well, in walked a stoic doctor with "that look". We could feel that sick feeling welling up inside us. She told us that Grace has a major bowel obstruction. We smiled and almost laughed, not because a bowel obstruction is not serious, but because none of this, in their opinion, appears to be a result of a new tumor. We can deal with this with much better statistical results than the alternative.

We are relieved in some respects, but are nervous that Grace may have to endure another surgery to resolve this painful issue. They are going to first try and place an NG tube to try and relieve some pressure. This may precipitate a complete clearing of the obstruction, however if it doesn't, they will move to surgery. The chief concern with an obstruction of this magnitude it the potential for bowel perforation, or tearing, that can lead to a release of toxins systemically. This can cause a severe infection and we don't want that. They plan to move quickly on this.

Please pray that the pain and obstruction are both relieved with the NG tube and that we will not have to move to surgery to resolve this. Thanks again for the prayers.

July 20, 2007 at 04:44 PM EDT

Hello All,

We wanted to let you know that we are currently holed up at Fairfax Hospital in Virginia. Grace has had pretty significant diarrhea for a couple of weeks which subsided on Monday after the doctor prescribed pro-biotics to help her GI tract get back into fighting shape. This seemed to work well and her diarrhea subsided. However, on Tuesday morning Grace started vomiting, stopped eating, and, more importantly, stopped peeing. We tried to nurse her through what we thought was a stomach bug on Tuesday and through most of Wednesday, but gave up and turned her over to the professionals in the ER on Wednesday night. We were particularly nervous about a couple of things associated with this most recent admission. The lack of urine, lack of poop, continuous vomiting, and pretty consistent complaints of back pain, mostly in the area of her right kidney, since last week, all sent shivers up our spine.

We have had multiple tests run on Grace since her admission here, most of which revolved around her inability to pee, out of whack kidney function tests, and, what we now know was, pretty profound dehydration. Thankfully, it would appear that Grace has some sort of kidney infection that has caused a number of issues including urine retention, hydronephrosis, and increased toxins in her blood. We take comfort in the fact that nothing else glaring appeared in the ultrasound. They have put her on antibiotics to try and resolve the kidney issue although they have no evidence, other than history, that there is an actual infection.

They have now moved on to the bowel issues. The fact that she has not pooped anything other than mucous, and that her large intestine is inflamed so much that it is visible as you look at her stomach, have them concerned that she has some sort of intestinal blockage. During the ultrasound they looked at her bowel and noted that it is full of fluid and that her gall bladder is full of sludge. They moved on to an abdominal x-ray, which concluded only that there was a lot of air/fluid in her intestine (duh?). We just returned to the room from CT where they did an abdominal CT scan with IV contrast to try and determine what was blocking the flow. Unfortunately, the reason they did it with contrast was to look for the presence of any neuroblastoma. We have no results from that as of yet. We will write again when we have those results.

We would like to ask for prayers that the disease is not back and for complete healing of her kidney and GI issues. We thank you in advance for your prayers.

The Oughtons

July 06, 2007 at 11:53 PM EDT

July 05, 2007

Hello Friends,

A quick note to let you know that we were released from Fairfax Hospital on Wednesday morning. We were very impressed with the nurses and doctors there and would like to thank them for making our stay as stress-free as possible. We are always a little nervous about our fist admission at a new (to us) hospital, but they were fantastic. Grace made an instant connection with Sarah, our day nurse for the first two days. I don't think that Sarah appreciated how rare that really is. We also learned that one of the new night nurses there was inspired to pursue pediatric oncology after learning about Grace's story. I am constantly amazed at the impact our princess has had on people's lives.

After an all-too-brief nap, we left the house and witnessed forth of July brightness and sparkling, not from the fireworks, but on the face of our daughter. She grinned and giggled as she watched the display. We couldn't tell you how good the display was, as we spent most of our time watching the looks on Grace and Landon's faces. Both kids made it about half-way through before Grace was tired and Landon was thirsty. The first half made it all worthwhile. It was the first time we endured that kind of traffic with a smile on our faces. Thanks for the prayers for that!!!

Today, we had follow-up labs drawn and all appeared in good order. Her platelets are still down, but we have confidence they will pop back up after she kicks this thing for good. Speaking of labs....we have a very specific prayer request. The treatment that Grace is receiving is extremely effective....we have seen kids who are proof of that. The treatment, however, can be undermined if Grace were to develop a resistance to it called HAMA. When you say your prayer for Grace, please ask God not to let Grace HAMA. It is extremely important.

God bless,

The Oughtons

July 03, 2007 at 03:07 PM EDT

Happy Tuesday,

We just had our meeting with the attending physician, Dr. Horn. We wanted to be clear on what the treatment plan was and ensure that we were constantly making strides toward discharge. She was receptive to the notion that when Grace is clinically stable, as she is now, she should be home, since there is plenty of time that she is required to be hospitalized. She also understood the psychological effects of being here, especially considering all of 2006 and the fact that we have only been home for two and a half weeks since February. All that said, the plan (now) is to do a follow up chest x-ray this afternoon to see where the pneumonia stands. She is about to receive a blood transfusion to correct the anemia that surprised us this morning. Dr. Horn feels that the hematocrit of 22.5 and the hemoglobin of 7.8 are a direct result of what was a significant respiratory infection. She says that severe bacterial or viral infections can cause these numbers to drop in healthy kids, but the drop can be more pronounced in children who have been hit hard by multiple chemo-radiation treatments in the past. We personally think that it is a combination of the GMCSF, the infection, and maybe even the fact that we started Accutane on Monday.... but that is just our theory. We are going to watch how she responds to the transfusion with follow-up labs at 5 AM. Prayers for great numbers please.

We will let you know about any changes. Hopefully we will be set free tomorrow morning so that Grace does not have to watch fireworks on TV for the second straight year. Dr. Horn has promised that she will round on us first.

The Oughtons

July 02, 2007 at 07:41 PM EDT

Hey All,

Well antibodies ended on Friday with out any craziness. Pain, as usual. Bone marrow biopsies went fine.

We came home on the train (never again... we'll address that another time) on Saturday around 5:15 PM and got a one day break.

This morning all was well when Alec headed off to work at 5 AM. Grace, however woke up with some respiratory distress that would not improve with her nebulizer treatments. Crystal took Grace to the pediatrician, where, upon entering the door, Grace began to rapidly decompensate. Her oxygen saturation was 85% after 4 nebulizers, without supplemental oxygen. Dr. Purcell, and her office staff, were calm, cool, and collected (as always) in managing her worsening breathing until the ambulance arrived. Spotsylvania County Paramedics (and their administration) went out of the way to ensure that we were taken to an appropriate facility, driving us all the way to Fairfax Hospital. Grace was seen in the ER by a very competent staff and moved to the 5th floor, from which we write you now. All told, Grace was administered six nebs and one racemic epi neb before her breathing and O2 saturations normalized without supplemental oxygen. Her chest x-ray shows obvious pneumonia on at least one side. Her lab work is completely out of wack, with a WBC of 47, CRP of 14.3, and LDH values slightly elevated. All signs, according to the oncologist, point to a pretty significant infection. They will start her on Rocephin and follow up on her labs and chest films tomorrow. We will keep you abreast of what is going on. So far, so good....considering.

The Oughtons

June 26, 2007 at 06:55 PM EDT

Hey All,

Waiting a month to give an update is really not fair...we are sorry. Obviously, a lot has happened in the month since we wrote. The summary is....

First four days of 3F8 antibody therapy,
Central line out, Mediport in,
Last day of antibody,
Home for two and a half weeks,
Back to NY for the second cycle of 3F8..... sigh.

The emotional side of all that has happened in the past month would take pages and pages of therapeutic mumbo-jumbo that may later be used to incriminate us.... so, we will give the cliff notes there too.

We will start with the antibody therapy as it definitely earns fist place. I distinctly recall the first infusion wondering what in the heck we were doing this for. I have never seen Grace in that amount of pain since the beginning of all of this madness. It was terrible. The medications did not even touch it the first day. Crystal did what she always does and shifted into business mode, watching vitals, facial expressions, and signs to aid the nurses in attending to Grace, all the while making mental notes about what could be done differently to minimize the effects of the treatment. I have no idea how she does it, but I am incapable. I kept asking why they did not anesthetize kids before the treatment and the answer…. they would have to hire a ton of anesthesiologists to sedate 15 kids a day for five straight days. I say it would be well worth the money. Grace handled the treatment much better on days two through five with intense pain lasting between 20 and 40 minutes, as opposed to the fist day’s hour and some change. I don’t know if any other families have experienced this or not, but after day one, Grace’s pupils were unequal and have remained so since the first day. We have not gotten a solid explanation about that yet, other than “it can be a side effect of the treatment”. We have not met anyone else who has experienced this side effect

We are two days in to the second cycle of therapy. Day one was pretty bad, but the combination of Dilaudid, Visteral, Ativan, and Tylenol seemed to have worked a little better today. Her pain was shorter in duration and seemed less intense than yesterday. It is extremely difficult to watch her go through this, but we were told by some of the older kids that the antibodies pale in comparison to chemotherapy. We are comforted by this (thanks Nick), and the fact that we know it works. We have seen it put kids with refractory disease into remission first hand.

The removal of the line was significant event. While we did not like seeing Grace go off to surgery again, we knew that this would mean a more normal summer for her. Two weeks after the port placement, Grace was able to take a bath, splash in the sprinkler, or swim. She only wanted the bath. We will work our way up to the others. It was nice for her to have the freedom to choose. We think she may be a little scared of the water, as she hasn’t been in a pool since she was about a year old. We will take baby steps there. She was very excited to have the line out and has allowed Landon to touch her port, so long as he was “super gentle”. Grace has made huge strides with and increased appetite, a greater willingness to get down and walk, and is the proud owner of another pound of weight. Another contributing factor to her improved emotional state is that she is also the proud new owner of a (slightly used, one-eyed) Blue Kitty. “Little”, the newest member of our family has taken to both kids surprisingly well and has brought laughs and smiles to both kids.

Landon is getting ready to play his last T-Ball game on July 7th and has had a great season, batting 1000 and playing the entire infield (at once with the rest of the team). He seems very excited about baseball and wants to practice constantly. We think that if he can focus on the batter instead of the bugs in the dirt, the planes in the sky, his friends on the field, the writing on his glove, the design on his shoes, etc, etc…. he will go far. Being home was very good for him too.

As a whole, we are doing quite well. We are happy that Grace is disease-free, but are reminded daily to remain hopeful, but keep our guard up, as we meet families who’s kids have relapsed post-antibody or during treatment. We remain dedicated to raising awareness of Neuroblastoma, and pediatric cancers as a whole. We are also excited that the GOCF will soon be making a contribution to the MSKCC pediatric research team. We encourage others to get involved in this fight. We appreciate all of those who did so at the GOCF 5K and those who have contributed to my ride in the PMC. Thanks again for your support. We will write again soon…. we mean that.

The Oughtons

May 28, 2007 at 10:53 PM EDT

Dear Friends,

We are sorry it has been so long since our last update. We ended up being discharged on Mother's Day and spent the better part of the week getting transfusions to chase platelets and fasting for anesthesia that never materialized. Grace was.... well, Grace and amazed radiology technicians and nuclear medicine technicians by lying motionless, without the help of chemicals, for her scans. We heard comment after comment about how they had never seen someone quite like her. We are somewhat accustomed to hearing that, but were equally amazed when, for the fist time, Grace lay with her eyes closed on the table for the MIBG scan with no TV, bubbles, or dancing technicians to distract her, and relaxed for an hour and a half. Grace, with some guidance from her mother, closed her eyes and breathed deeply to relax herself. She later told us that she imagined that she was a bird. She was sedated only for her bone marrow biopsies, which were taken just after the MIBG. After a grueling five weeks, we were all ready to head home to VA.

We took leave of NY on Friday the 18th and arrived home around 11pm. We were fortunate enough to meet and fly with two other NB patients and their families, all from Virginia. We spent a very hectic week at home trying to catch up on 5 weeks of bills, work, and life in general, knowing that seven days later we would be headed back north. It went by in a flash.

We flew back here on Friday the 25th and we have been trying to relax prior to the 3F8 antibody therapy that will start early tomorrow morning and be repeated Wednesday, Thursday, Friday, and Monday. We are nervous about the therapy, but we are confident in the staff's ability to control her pain. Next week, we should celebrate the removal of Grace’s dual lumen central line and the placement of a medi-port. No more dressing changes, Gracie, and tubbies whenever you want!!! Please pray for an uneventful two weeks.

Oh yeah… by the way, Grace is in remission again. :) We received the report on Friday that her CT scan, MIBG scan, and bone marrow biopsies all showed no evidence of disease. While we are happy, we know that treatment must go on to ensure that she will remain without disease for good.

The Oughtons

May 12, 2007 at 08:47 PM EDT

Good Saturday Evening All,

Great news this morning... a white count of 0.7 and an ANC of 300. The bone marrow is up and running. I'm getting quite weary of Crystal always winning the bets, but it is looking like we will be getting out of here tomorrow. In our discussion with the attending today, she said that she expects we will be released tomorrow, even if Grace’s ANC and WBCs are not technically within parameters. I think the banter between Crystal and I made it quite apparent that we need to be released or they will have to lock us up in a padded room. It is amazing how insane a hospital will make you. It seems as though you just hit a wall at day seven or eight and rapidly develop a mental illness. I’m sure there is a name for this syndrome…. we’ll have to watch Dr. Phil more often. We will most likely have to get blood and platelets tomorrow morning, prior to release, so it may be late afternoon before we get back to the RMH. We are looking forward to our first night out of the hospital in two weeks. The funniest part of that whole thought is that we will be staying in about the same sized room, away from home, and there is no room service. I guess the fact that we will be able to see sunlight at some point throughout the day is what seals the deal. We are also very excited to get back because there are a lot of our new friends either at the RMH right now or arriving tomorrow. We are also eager to get out because Landon is scheduled to come back up on Monday. As you may recall, he was not allowed to see Grace while she was on the “inpatient” side of the 9th floor. It will be very good for her to see him; she has become very depressed. Today we mentioned going home and she broke down crying. She hates it in the hospital, but she tolerates it so well. I think she is at the breaking point too.

Big news on the “growing up” front… Today, Grace was required to take four hours worth of urine samples for Dr. K. Any parent who has ever “bagged” their children for urine can attest to the fact that it is painful for the kids, only works half of the time, and is always, always messy. After the first batch leaked all over the floor and I ended up wearing the second batch, we suggested that maybe Grace could go on the potty. You’d never believe it. For four hours, this (almost) three-year-old girl told us when she needed to go and sat on the potty for the urine tests. We’re thinking that she might be ready to potty train (duh… do ya think). It is amazing that she is capable of progressing and hitting normal benchmarks in such an abnormal environment… but I guess we already knew she was amazing.

We will write tomorrow and let you know if we flew the coop. We wish “safe trips” to all of those who are heading this way for the week. Thanks for keeping up.

The Oughtons

May 11, 2007 at 08:42 PM EDT

Hello Friends,

A Tribute to Moms…

In honor of Mother’s Day being right around the corner, we wanted to take a moment to thank all of the moms that have made such a difference in our lives over the past year and a half.

First, we would like to thank Gale, Crystal’s mother, for taking on the role of full-time mother again, just a few short years after kicking the last baby bird out of her nest. Her attention to Landon in this tumultuous time has made such a difference in our lives. Without her, we are not sure how we could manage all that we have going on. She has helped so much by providing a stable environment and loving home for our handsome little boy.

We would also like to recognize all of the amazing oncology mothers. We can’t imagine a group of mothers that are more dedicated to their children, more educated about their enemy, or that are capable of greater strength and grace in the face of constant heartbreak. The craziest part is that they don’t stop there. Despite their own adversity, they work tirelessly to be “there” and are pillars of support for each other – a truly remarkable group of people.

So, we have often talked about how we would probably not be involved in this world if we did not have to be, right? Next we want to recognize the other mothers who are constantly there for us. Some of them we know quite well and some we have never met. They seem to read our minds and know just when to call, send a package (especially chocolate), or post encouraging words on the Carepage. They are spread all over the world, but are constantly there when we need our pieces picked up, dusted off, and glued back together. They are constantly “packing our parachute”, to borrow the words of an old military fighter pilot – our interminable support group.

Then there is an elite group of mothers…. they are mothers of angels. These are the strongest mothers on earth. It is difficult to write anything about this group of moms, as no words could ever describe them. We will say that they are still beside us, they still support us, they are positive in their outlook…. they never concede to cancer. Cancer cannot kill their spirit or the spirit of their beautiful children. Nothing will ever beat these women.

And now…Grace

Today Grace’s counts remained stable. We woke up to lab values as follows: WBC 0.2 (again), Platelets of 15, a crit of 24.2, HGB of 8.6, a billi of 1.1, AST and ALT values of a perfectly healthy liver, and for those doctor-types out there (or completely in-tune oncology families) a ridiculously high monocyte count. The WBCs are coming!!! Crystal has bets on Sunday for getting the heck out of here. Unfortunately, even if that happens, we have a very full week ahead. We met with Dr. K today and received our schedule for the re-evaluation of Grace’s disease status. Next Wednesday Grace will get her injection for her MIBG scan. She will also have a CT scan of her chest, abdomen, and pelvis to verify that all is still well. On Thursday, Grace will go to Nuclear Medicine for her MIBG scan and then move to the procedure suite for bone marrow biopsies in four sites. If she has no evidence of disease, we are slated to begin the 3F8 antibody therapy the week of May 28th. If her counts stabilize, we may very well get a week or so at home. That would be the best medicine of all.

We are happy with how Grace is progressing, but this week we were reminded that the treatment is not without risk. Jamari, a mainstay of the RMH, died Wednesday from medication complications. He is survived by his brother, sister, and mother. He was reportedly responding very well to the treatment. We did not know Jamari personally, but we have heard that he was an amazing young man. The sights, sounds, and events here are sobering. Thanks again for your thoughts and prayers.

The Oughtons

May 10, 2007 at 11:44 AM EDT

Good Morning,

We continue on a steady course of improvement. This morning was the second morning in a row that Grace had a white count of 0.1. She has had a 0.1 before, but not on two consecutive draws, so we are very encouraged. Her billi today was down from 1.8 to 1.4, her girth was 42.5, and her weight was 9.5 kg. Everything appears to be stable. We discussed with them the time frame in which they would do the follow-up ultrasound to determine if there had been a normalization of flow in her liver, but we have not gotten an answer yet. All of the clinical signs are indicating that the VOD has resolved itself, but that test would give the definitive answer.

On a personal note, we have never been so ready to leave the hospital. This admission, although only 12 days so far, has seemed nothing short of an eternity. We are tired of being here and we know that Grace is depressed about it as well. She needs to be around her brother and other kids her age...that is her therapy. Please pray for a white count of 1.0 tomorrow...that might buy us a ticket out of here.

I know it has been a while, but we posted some new pictures on the carepage and here, so take a look if you get a moment. Thanks for keeping up with us.

The Oughtons

May 07, 2007 at 07:02 PM EDT

Dear Friends,

We appear to have made the turn for the better. After the transfer to the POU (Pediatric Observation Unit), and very close monitoring of Grace’s ins and outs, she has trended downward with respect to her weight, girth, and liver enzymes. Are we done with VOD? We have no idea. The overall trend has been good, but there will be the occasional bump back upward that makes us sweat. We hope we are done with VOD. For those who can interpret these numbers, her billirubin is down to 1.7, AST is 39, and we don’t have her ALT for the day. Her girth was 44 and her weight was 9.9 kg. On the “normal” front, we are still awaiting the awakening of her marrow. She has teased us a couple of days with a 0.1 white count, but the following day is back to 0.0. She is holding on to her platelets, hematocrit, and hemoglobin longer than she did previously, but is still requiring daily transfusions of one, the other, or both. This is encouraging. More encouraging than the lab numbers is her drive to eat and drink. This drive remained absent until much later in the previous round in Boston and we are hopeful that her desire to eat and drink is a sign of good things to come. Thanks for the prayers and thank you God.

We continue to meet new and wonderful people here in NY. Alec and Landon went out for drinks last night at the local pub with some friends from the RMH (Landon ordered a “screwdriver, hold the vodka”). It was intriguing to sit across the table from 3 other families fighting the same disease, when we met only four NB families in our entire stay in Boston. This bunch had traveled from Upstate NY, Mississippi, and West Virginia. We are certainly not alone in our trek to NY. The RMH is full of neuroblastoma patients in varying stages of treatment, severity, and complexity, who have traveled from as far as Australia to know that they are doing all that they can to fight this.

Landon has enjoyed a longer-than-expected stay here in NY. He was originally supposed to return to VA last Friday, but as things started to develop with Grace, we were more comfortable having everyone close by. We remembered last time. Landon did say that he likes NY better than Boston because they have yummier bagels and cream cheese – a staple of his diet. This is obviously no reflection on the company from Massachusetts, merely one more indication that Landon is all boy and thinks, like the rest of the male population, with his stomach.

Grace will remain in the hospital until she develops some means to fight infection. Even an ANC of 500 would get us clear of the antibiotics and clear of the hospital. They have just started her on double the dose of GCSF to expedite the process, so hopefully the pace will pick up. Once we are out of here, we are not sure how much time we will have to come home. The plan is to move very quickly into the antibody (3F8) after the scans show that she is NED, so we are wary of heading home between those processes. We don’t want to put Grace in a precarious position by delaying any phase of the treatment.

We are pleased to be back on track and, again, we thank everyone who offered prayers and messages of support. We will update again soon.

The Oughtons

PS. We hope that everyone has his or her running shoes ready for the Race for Grace in Fredericksburg on June 2nd. This year promises to be a fantastic race for adults and children with the introduction of the “Fireman Chase”.

May 03, 2007 at 12:48 PM EDT

Last night, we were transferred to the Pediatric Observation Unit of MSKCC. Nothing changed acutely to prompt the move, but Grace's weight continued to rise, as did her abdominal girth. She was 500 ccs positive with regard to her input and output, which is what leads to a weight of 10.9 kilos and an abdominal girth of 47.5 cms. The evidence of VOD was mounting with an afternoon elevation of her AST and ALT to 216 and 136 respectively, and her billirubin to 1.7. All of these factors, in combination with the abnormal portal vein flow confirmed by ultrasound, lead the physicians to believe that we are headed down the VOD road. While her respiratory status remained stable, they were intent on getting a more detailed I and O report and placing her on 24 hour cardiac, respiratory, and central venous pressure monitoring... thus the move. Unfortunately, it took place at midnight.

Just prior to our transfer, Grace was started on fresh frozen plasma, a very balanced hypertonic solution, the intent of which was to draw the extra-vascular fluid back into the veins so that she could pee it out. Upon our arrival in the "POU", as they call it, she was administered 10 mg of Lasix, a diuretic, to encourage her kidneys to process and eliminate the fluid. One of the biggest complications of VOD, as we understand it, is that the increased pressure causes the fluid to shift, on a capillary level, from inside the blood vessels to outside. Thus, she gets the ascites, or fluid in her abdomen. This, in and of itself, can be very painful and can impair the diaphragm's ability to work properly. This causes her respiratory rate to go up and her lung volume to decrease, leading to difficult breathing and poor oxygenation of the blood. The other complication of the fluid shift is the fact that, while she retains all of this fluid, it is not where it needs to be, in the vessels. In layman’s terms, it is like having a broken pipe in your basement. The water is coming in, but it is filling the basement and your pipes are dry. If it is not in the vessels, her body is dehydrated and her kidneys and other organs suffer as a result. The balancing act for the doctors is to maintain proper cell counts, electrolytes, and intravascular hydration, while not contributing to the ascites and all of the mechanical problems it can cause.

This morning, her lab values seemed to show that Dr. Kaplan's approach was effective. While her billirubin climbed to 2.2, her AST dropped to 176, and her ALT to 131. Her girth was down 2.5 cms to 45 cms and her weight was down to 10.4. All of this while her CVP maintains acceptable levels. We are not out of the woods by any means, but we will take any good news we can get. Thanks for your messages of support. We will write again if anything else develops.

The Oughtons

May 02, 2007 at 11:53 AM EDT

Well, we should know not to ever say anything without knocking on something. Again, right after pressing the "post" button on the carepage, Crystal asked me if Grace's tummy looked bigger. We both looked together and, without a doubt, her abdomen was distended. We called in the NP and told her about it. As is typical, she discounted what we were saying and told us that there were a number of reasons it could be distended (mostly revolving around her intestines). This, of course, did not explain why the distention was extending to her chest or why she weighed 0.9 kg more than her admission weight. She ordered liver function tests for the AM, which, needless to say, did not make us happy. Later in the evening, Grace began to complain of right-sided pain. We immediately paged the Fellow, who was much more responsive to our concerns. He immediately ordered LFTs and said that, if they were at all abnormal, he would order an abdominal ultrasound, which is the only definative way to diagnose VOD...yes, VOD. As we expected, her LFTs were high and this morning we travelled to ultrasound to confirm what we already knew, Grace, again, is developing VOD. Right now we are not clear on the severity. We feel as though we caught it earlier this time because the Fellow actually listened to the parents and took the needed steps, even thought the potential cause didn't reach up and smack him in the face. We also are comforted somewhat because her LFT numbers are not off the chart. The "laboratory" presentation of this liver issue is a little different than last time, in that her AST and ALT were in the 80's yesterday (150's today) and her Billirubin was 1.3 (0.8 today). When she got VOD in transplant her AST and ALT shot up and her billi was slow to follow. This time it seems as though her billi went up before her AST and ALT. We are not sure what to make of this, although we are hoping that it is somehow related to one of the antibiotics that she was on (Cipro) that was toxic to her liver. They stopped this antibiotic last night. Presently, Grace has gained over 2 pounds in fluid, her abdominal girth is 46 cm's, her AST is 190, ALT is 111, and her billi is 0.8. They have not rounded on her yet. We will update again after they do.

The Oughtons

May 01, 2007 at 05:29 PM EDT

Good Afternoon All,

We are sorry that it has been a couple of days since we last wrote. We ended up having a busy weekend, which made it very difficult to write an update.

Grace had her final dose of Topotecan on Thursday. It was relatively uneventful. The rash that developed during the last cycle started to show itself about Wednesday and the NP’s on our team took a serious look at it. They strongly felt that, while it appeared to be a “drug rash”, it was not from the Topotecan. Ester, one of the NP’s, felt that it might be a reaction to one of the antibiotics that she was on for the low-grade fevers that had developed, Ceftriaxone to be exact. While Grace was given this antibiotic in the past, it would not be out of the question for her to have developed a hypersensitivity to it. When Grace developed this rash in Boston, a reaction to antibiotics was something that nobody really considered. It would appear, at least preliminarily, that Ester was correct. On Friday, and over the weekend, the rash looks much less “angry” and has progressed to the peeling stage that we did not see until very late in her recovery from the last round of chemo. We will do a follow up test at a time when she is not getting chemo, or any other new meds, to determine whether or not she has actually developed an allergy to Ceftriaxone and Cefepime (an antibiotic in the same family).

On Friday, Grace did well with her “post-hydration”. She had one fever throughout our day in clinic, which subsided by the end of our day there. Landon left midway through the day to fly back to Virginia, which ended up being a very traumatic event for Grace. When Landon left, Grace broke down crying saying that she didn’t want Landon to leave. We are beginning to see how truly important it is for them to be together. He is coming up here again today. They sent us home Friday with a hydration backpack for the weekend, so that Grace would not have to work so hard to eat and drink. We really didn’t think that we would make it through Saturday without coming in for a fever, but we did. We went for a long walk in the morning and spent the rest of the day lying in bed watching princess movies together. While initially skeptical, we have become big fans of the outpatient chemo administration.

Sunday was another day. Still with no fevers, Grace woke up with blood oozing from her nose and petechiae on her face. Her nose stopped bleeding on its own, so we decided to watch her, knowing full well that we would likely need platelets some time that day. Throughout the morning we watched as the petechiae spread to her head and hands and her nose continued to ooze on and off. We decided to pack her up and head to the Urgent Care (MSKCC’s after hours clinic). Grace had no fever, so we fully anticipated getting juiced up on platelets and walking out in a couple of hours. We should know by now that we should not anticipate anything. Her platelets were 4.0 (we’ve never seen them that low) and her white count was 0.2 (from 4.0 Friday). More importantly, Grace developed a fever while we were in Urgent Care and that bought us an inpatient stay until her counts come up.

Over the past couple of days, Grace has had an intermittent fever and has required multiple blood and platelet transfusion to try and get her counts to safe levels. Her white count is a whopping 0.0 and they have not been able to get her platelets over 10. They are going to look into whether or not she is getting any bump at all from the platelets immediately after the infusion to make sure that she has not developed and antibody that is fighting the platelets. Dr. K explained that they might just have to give her platelets from a different type of donor, but that he is not concerned right now.

Other than that, Grace has been moving along without incident. It is pretty boring, but bored is a good way to be in the hospital. Thanks for keeping in touch. We’ll write again soon.

The Oughtons

April 25, 2007 at 10:45 AM EDT

Good Morning Friends,

We have started day three of Grace’s chemotherapy here at MSKCC. Over the last two days, Grace endured long hours at the Pediatric Day Hospital reluctantly receiving high dose chemo and progressively feeling worse. On day one she received Cyclophosphamide, Vincrisitne, and Topotecan. Day two brought Cyclophosphamide and Topotecan. Today and tomorrow, she will only get the Topotecan. Friday we will come in to have her electrolytes evaluated and to receive IV fluids. For those that remember the last round of chemo, it is very much the same. Grace gets, what they call, “hyperhydration”, which is about two and a half times her maintenance dose of fluids. This, in combination with a drug called Mesna, help to protect her bladder from the chemotherapy. You may also recall how hard this chemo hit her. We are prepared for that response again, but we are trying not to expect it. Dr. K explained that there can be a variety of responses to the same chemo, so we will take it all in stride.

Overall, we have been very pleased with the care we have received here. Our infusion nurse, Emily, is extremely knowledgeable and personable. She has taken quite a bit of time to explain their procedures and processes so that we can feel comfortable with the changes (and there are quite a few changes). We were very skeptical about getting “outpatient” chemotherapy, particularly in these doses, but we have enjoyed returning to the room and snuggling with both kids for bedtime. We travel with a backpack, which contains IV fluid and a portable pump that infuses her needed fluids. This eliminates the need to be tied to the hospital just for the “tubies”. The other thing that has boosted our (blind) confidence is the sheer number of neuroblastoma patients who we have encountered here. We haven’t counted, but we would guess that greater than 75% of the families that we meet in the RMH are here to be treated for varying stages of NB. Over the past year in Boston, we encountered four or five families…total. It has been therapeutic to talk to these families about their experiences here and abroad.

Another interesting piece of the Sloan Kettering experience is the approach to treatment, the evolution of therapy, and the reporting of statistics. We had an extended conversation with Emily about this yesterday. We were very skeptical of the therapy here because there were no published statistics or concrete “numbers” regarding their regimen. While this is not important once you select a protocol, it is important in determining where you will travel for treatment. Now, we know why there are no numbers. This hospital will not have a “control” group. For those that know how clinical trials work, you know that you need some that get the study drug and some that don’t. There also needs to be certain controls on what the patients get and what they don’t, so, in theory, you shouldn’t receive any other therapy to ensure the study numbers are correct. Here, the individual patients are the focus and if a particular course of therapy (or trial) does not seem to be working, they will immediately shift gears and try something else, regardless of the effect on the study numbers. They try and try and try to save each and every child. I know that this is every hospital’s goal and that the studies are important for future patients, but it is such a struggle for any family to sign a consent for a “randomized” study, in which their child may not receive a drug that has shown such promise in the laboratory setting. Sometimes the experimental drug is their last to save their child. Just in case you were wondering….

Landon is here with us, as we’re sure we mentioned before. He has endured so many changes over the past year and a half and has done so well. Living at the RMH has been another big adjustment for him, but he is being such a big boy. He comes to the (very large) playroom here at the Day Hospital and plays basketball (not on a court), video games (that confirm you should never give your car keys to a four year old), and watches videos. The child life department here is very large and they have a number of different things that they can do with the kids. Landon has also been a great big brother. Grace will ask for him to come to her infusion rooms and he will (reluctantly) leave the playroom, come to her room, and hold her hand as she has blood drawn from her “tubie”. He doesn’t want to be around her all of the time, but when he is around her, he is very cuddly. Landon and Daddy took a trip to NBC Studios last night for a tour. We were taken on the tour by Janice Huff, whose name you might recognize as the Sunday meteorologist from the Today Show. We saw the set of SNL, Landon sat in the “guest chairs” for the Conan O’Brien Show, and he took a picture in front of the local Channel 4 News desk. The highlight of his evening was the transportation in the NYPD van (again with lights and siren, here and there).

We’re sorry to have rambled on. This started as a quick update, but as usual, there is so much to tell. Please continue to pray for our wonderful friends who are fighting so hard and we should never forget to say “thank you” for the prayers that have been answered.

The Oughtons

April 20, 2007 at 02:08 PM EDT

Hello Friends,

I want to update you on how Grace is doing, but I want to tell you about a friend and ask you for your prayers. Our good friends, Lauren and Ralph, have gotten more difficult news about their son's relapse. The scans indicated that Matthew's cancer is not only back on his liver, but also around his brain. They are devastated and need prayers. We ask for prayers for their son, for the doctors taking care of him, and for his parents, who have been pillars of strength and prayer warriors for so many other families, including ours.

As for Grace, we have little to report. Thursday's appointment included only the scheduled infusion of the antibiotic. They decided to wait until Monday to begin the chemotherapy. Her counts were slightly improved, but we found pretty severe thrush in her mouth. Thrush can be cleared pretty quickly with a topical anti-fungal medicine, but would be complicated by chemotherapy. We are somewhat happy that she will have just a couple of more days to recover before getting knocked down again. She seems to be slowly, but steadily, improving.

Last night we took a special trip to the Coldstone Creamery, sponsored by the NYPD and the Ronald McDonald House. We rode over to the ice cream shop in a NYPD van (lights and siren). It's amazing that nobody honked at us and we could park wherever we wanted. Grace giggled the whole way. We were sure to explain that this was the only time she was allowed to ride in the back of a police vehicle. She ate quite a bit of her white chocolate ice cream.

Grace had a rough night trying to poop. She was up every couple of hours in a lot of pain as she tried to do her business. A couple of the medications that she is on can cause constipation and apparently did so last night. At about five this morning, all was well. A two and a half year old, a full diaper, and two happy parents lie together in bed until about nine. Today, she actually let us put her down to walk. She chased a balloon around for about 20 minutes, which is the most mobile she has been in a week. Her eating is still not where we would like to see it, but we are willing to take baby steps. I think that we have a beautiful weekend in front of us here in NY and we will try to get her out and about.

Thanks for keeping up with us.

The Oughtons

April 18, 2007 at 11:51 AM EDT

Hello All,

Yesterday was our first outpatient visit to the Pediatric Day Hospital at MSKCC. Grace was checked in, had a finger stick for her CBC, and was taken back to see Dr. L. He was pleased with how well she is progressing and was optimistic that we would start chemotherapy. We thanked him for doing such a good job with our daughter and he pointed upwards as if to say, "Don't thank me, thank Him." Dr. L told us that while he will continue to follow Grace very closely, we would no longer have to make appointments for surgical follow-up visits. He said he would just catch us while we are there for our outpatient visits.

While we were in the meeting with Dr. L, one of the staff for Dr. K (the oncologist) came in and told us that, when we were done, we should go to the infusion room to start Grace's prehydration for chemo. We looked at each other and laughed, as we really had no idea what they were really going to start, what they were giving, or in what dosage. It is weird enough to have other people dictating your life, but even stranger when they don't communicate it with you. We followed our instructions, went to the infusion room, and began prehydration. Dr. K came to the room and informed us that Grace would receive "High Dose Cyclophosphamide, Topotecan, and Vincristine". This is the same regimen that Grace received in Boston, which was pretty brutal. We reminded him of how rough it was for Grace and let him know that it is very likely that we will have to be admitted. He left the room for a short period of time and, when he came back, he told us that they were not going to start yet. He is concerned about her counts not being strong enough and the proximity to surgery. He said that he just wants to give her a little more time to recover. He wants to see us again on Thursday to check her counts and they will decide whether to start then or Monday. We were not pushing to get the chemo started, as we think Grace could use a couple more days to heal. We were also prescribed Folic Acid (to help her counts), Megase (to stimulate her appetite), and were started on Pentamidine (in place of the Bactrim as her pneumonia prophylaxis). We will go in first thing tomorrow for our appointment and we will have more information at that time.

As for the long-term plan, it looks as though we could be here for three to six more weeks depending on how Grace handles the chemo. The plan, as we understand it, would be:

- Four days of chemo (outpatient),
- Recover for about two weeks,
- A complete work up (including CT scan, MIBG scan, and bone marrow biopsies),
- The first round of antibody therapy.

They have very strict timetables for these things, so the likelihood of traveling between the phases of treatment is slim.

Thanks again for the calls and email. We appreciate the encouragement and support. We will update again tomorrow.

The Oughtons

April 16, 2007 at 08:49 PM EDT

Good Evening,

Just a quick update to let everyone know Grace was discharged from MSKCC today. Yes, you read that correctly. Five days after major surgery, being on a ventilator, and having a chest tube, we are back at the RMH (Ronald McDonald House). We were a little sad to leave since we had Josh Hardy as a roommate, but we are enjoying spending time at "home" and we will continue to see him and his family.

We have a clinic appointment in the morning, hopefully to start chemo. Grace continues to do well and had an amazing smile on her face all day today. Please continue to keep all of these amazing children in your thoughts and prayers. Thanks for all your encouraging words.

The Oughtons

April 15, 2007 at 05:31 PM EDT

Good Rainy Afternoon,

Well the torrential downpour here has begun, although it doesn't seem so bad from the ninth floor of MSKCC. It looks wet, but not that windy down there. The rain definitely makes it a little easier to be inside. I think if it was 90 degrees and sunny, we would be itching to get out.

We were moved to the pediatric floor last night around 9 PM via the long and arduous ambulance ride across the street. Grace was disconnected from the IV fluid and monitors at around 7 PM and we patiently waited for the transport team to get there. The fact that we could have walked across the street with a nurse in 5 minutes made the whole thing very comical, but we understand the world attorneys have created for us to live in (no offense Bernie, we love you). Grace was admitted to the 9th Floor with only the chest tube remaining from the PICU. The chest tube is the tube designed to allow any drainage from the surgery to escape from her chest instead of filling it and collapsing her lung. She was connected back to IV fluids here; although she was allowed to be free of the continuous heart monitoring, pulse oximetry, and supplemental oxygen. We arrived late, so she received her meds and went to sleep. We cannot say enough about the staff at NY Presbyterian's PICU. The entire staff was competent, caring, and personable. The nursing staff here at MSK, so far, has been great, although a medication dosing error at 6 AM (Toradol at 3X the prescribed dose) and a failure by the X-ray technician to shield Grace's reproductive organs during films, has left us a little frustrated and much more watchful. It is very tiring when you have to police everything. At about 3:30 this afternoon, the surgeon came and removed Grace's chest tube. She is now completely "tubie" free, except of course her IV fluids and meds. She is getting blood right now to help her Hemoglobin of 8 and Hematocrit of 23 and is sleeping as a result of her pre-medication for the blood products. When she wakes, we will attempt to get her to the playroom, which will make her very happy. We're hesitant to say anything, but the doctors have already started talking about discharge...yes, four days after this major abdominal surgery. This little girl of ours is simply amazing.

One very interesting and spiritual thing happened yesterday though, that perhaps explains why she is doing so well. Crystal was given a bible by one of our neighbors in the PICU. She gave it to us opened to Psalm 23 and told us that she knew we didn't have our bible with us and we could use hers to read to Grace. Crystal did just that. Now, Crystal has been praying that God would wrap his arms around our precious baby and comfort her while she was in surgery and there is really no way to know for sure if that happened.... except for what Grace told us. After reading Psalm 23 to Grace, Crystal asked her if Jesus was with her while she was having surgery. Grace's face lit up, she smiled and said, "He was". We are completely convinced that this precious little angel is not enduring this alone. She is protected, guided, and comforted by our Lord Jesus Christ.... and now we know for sure.

Please continue to pray for our friend Josh (our soon-to-be roommate) who is recovering from surgery, our friends Leo, Jessie, Lia, and Matthew who have relapsed and must start this fight over again, our friends Max and Tate, who are entering the bizarre and scary world of transplant, and all of our friends who are in the midst of battle or remission. Tell God their names and ask that he take as wonderful care of their babies as he has of ours.

The Oughtons

April 13, 2007 at 11:39 PM EDT

Good Evening All,

Today was a very eventful day. Grace was extubated first thing this morning. Throughout the day she progressed quickly, clinically speaking. She was administered epinepherine nebulizers and steroids to keep the swelling down in her airway. This worked reasonably well, although she remains on oxygen to keep her oxygen saturation at acceptable letters. She also received pain medications throughout the day to keep her "owies" in check. Grace was restless all day. She seemed unable to get comfortable and, perhaps because of the combination of medications, was disoriented and scared. She rolled around the bed trying to get in a position that felt okay, but never seemed to find one. During all of the rolling, she managed to partially dislodge her arterial line which subsequently had to be removed. All told, she got rid of her ET (breathing) tube, her NG (nose to belly) tube, and her arterial line (used to measure blood pressure and blood gasses) today, so we definately are moving in the right direction. Every time she got one out, she would move on to negotiating the next one. She was given some additional sedatives to allow her to rest tonight. Dr L., the surgeon, came by this evening and advised us that she will most likely move to the step-down unit tomorrow and that she could begin drinking and eating immediately.

Thanks for the calls and messages. We'll let you all know what happens tomorrow.

The Oughtons

April 12, 2007 at 10:33 PM EDT

Hello all,

Nothing here earth shattering to report. Grace is moving along steadily. They decided against extubation today because she was still not balanced with respect to her fluids. They did, however, cut back on some of her sedatives and she has had periods of awake time when we have been able to explain the tubes that are in her mouth and nose. She comprehends all of this amazingly and is able to communicate extremely well, nodding that she wants the tubes out, or shaking her head when she doesn't want to be moved. In fact, she was giving the off-going nurse high fives at shift change. Her adaptation to her current environment is nothing short of incredible. The doctors are all pleased with her progress and are predicting that the tube will be removed tomorrow morning. That, of course, is subject to change. In short, she is clinically very stable right now and we project that a move to the step-down unit will take place in the next two days. The plan is still to give chemo as early as the weekend. We will post more later.

Thanks for all of the calls. We we're sorry that we can not return them all. They will not let us have cell phones on in the ICU.

The Oughtons

April 11, 2007 at 07:43 PM EDT

Grace came out of surgery at about 5PM and went to the post-op recovery room. After she was there for a short period, she was transferred by ambulance to NY Presbyterian's PICU. She remains intubated and sedated and most likely will stay that way for a day or so. Dr LaQuaglia was not a ball of glee when he emerged from the OR and said more than once that this is not the end of the treatment. He said that all of the tumor that he removed was alive, not dead as we expected after chemo. He does believe that he got it all and said that they were able to effectively irradiate the affected area with good shielding of the surrounding organs. Tissue was also taken from the liver and left lung to ensure that there is no obvious disease there that went undetected. He also believes that they may start chemo again as early as this weekend. We will know more about that tomorrow and we will have pathology results next week. Please continue to pray for an uneventful, painless, and peaceful recovery.

We'll write again soon.

The Oughtons

April 11, 2007 at 02:57 PM EDT

Good afternoon,

The latest update is vague. The nurse liason advised us that she was unable to get a direct report from Dr LaQuaglia because they had already started the intraoperative radiation. This should mean that they have finished removing the tumor. They said that they will update is again when they are able to get a face-to-face with the surgeon.

The Oughtons

April 11, 2007 at 01:04 PM EDT

Hello all,

Just a quick update. Grace started with bone marrow biopsies at 1030 after sedation at 1010. We were just told that the incision for the major part of the surgery was made at 1145. They told us that all appears to be going well so far although we are just now getting to the tedious part. We will give more news as it becomes available. Thanks for being there.

Alec and Crystal

April 11, 2007 at 10:34 AM EDT

...and off she goes. We will keep you all in the loop as we get news of the surgeon's progress.

Thanks.

April 11, 2007 at 06:17 AM EDT

Good Morning All,

Well, today is the big day. After a couple of weeks of some semblance of normalcy, we have arrived at the date of Grace’s resection…. the sequel. Just two days shy of last year’s resection date Grace will enter the operating room around 0730 this morning in to remove the new tumor that has surrounded her abdominal aorta and vena cava.

Grace has spent the last couple of weeks at home enjoying all of the pleasures of her own room, her own toys, and food that was not manufactured in the confines of a healthcare facility. All told (save the insurance conflicts), the family has been whole again, for a short period of time. We’ll certainly take those stints. Since our arrival in Manhattan’s Upper East Side on Monday evening, we spent most of Tuesday at Memorial Sloan Kettering Cancer Center checking off boxes in preparation for today’s surgery. We met with the IV team for labs, the surgeon’s nurse practitioner for the first piece of the surgical consult, the radiation oncologist to discuss the intraoperative radiation therapy (IORT), the surgeon to discuss the surgery, cardiology for and EKG, and finally Dr. Kushner to discuss the overall plan. We were all ready to return to the Ronald McDonald House (RMH) after seven hours in meetings. The best part of yesterday though, was the time we spent with Grace. After our return to the RMH, we watched princess movies for a little rest, then jumped in a taxi and headed to 5th Ave and 58th St, the home of FAO Schwartz. Grace wandered through the store amazed by the wall-to-wall, floor-to-ceiling toys, puppets, dollhouses, baby dolls, and life-sized stuffed horses (to name a few things). She was also taken by the 10-foot tall Batman, constructed only of Lego’s. It was an amazing place. We were quite pleased when Grace decided that she wanted a $12 baby doll, instead of the $3000 stroller. There were definitely some over-the-top items there as well. We then sat down for a dinner of ice cream at the parlor inside the store. It was “super yummy”, as Grace would say. After our field trip there, we returned to the RMH, bathed Grace, changed the dressing on her central line, and then headed downstairs for the Native American Music Presentation. Grace, Mommy, Daddy, and Poppy all danced to drums, flutes, and amazing voices for a couple of hours. It turned into a really amazing day. Grace, dancing in her princess dress, became the star of the show for the photographer and videographer (what’s that…. nobody is surprised??).

We are getting ready to head to the hospital for our 0630 check in. Please pray today that whatever happens today will be on God’s terms. Please pray that Grace will have strength, peace, and comfort during and after the surgery. Please pray for the surgeon to have steady hands and a sound mind and take comfort in knowing that he will be praying too, as he does before every surgery.

We will keep you updated throughout the day, as information is made available to us.

The Oughtons

April 04, 2007 at 12:17 AM EDT

Good Evening All,

We have been given a surgery date of April 11th, so we can all pray together that morning. We do not have any details as of yet as we have not yet met with the surgeon. We are scheduled to take care of that the day prior to the surgery. Still no word on the insurance front. We have heard some positive feedback, but we have nothing "in writing" as we write to you.

The decision was made that no additional round of chemotherapy would be given. Grace's counts recovered nicely after the first round and there was no longer a need to draw labs this week. We feel strongly that she is still healthy and is well prepared for surgery. We were hopeful that they would find an earlier slot to fit her in for surgery, but that has not happened, so we wait.

We were lucky enough to have actually made it home for a week, so far, and, God willing, we have another week to come. We arrived at home to find that some friends took their time and money to make the house as relaxing as possible for us upon our return. It was like walking into a house from Southern Living. Crystal was in tears with the realization that so much of the work that she anticipated having to do when she got home was already done. Some of the major projects on my list were already taken care of as well. Grace's room was phenomenal and the rest of the house was breathtaking. As we have said before, if you ever lose faith in humanity, just come talk to us. We will restore you. Grace has enjoyed her time at home. She has a light in her eyes and a spring in her step. She is full of life....and that fills us with hope.

Speaking of hope....The Child Life Team at Children's Hospital is putting together a book called Faces of Hope. Grace's picture was included in the book and they asked us if we had anything that we would like to write about hope.... and Grace. We submitted the following and we wanted to share it with you.

Amidst the pain of illness,
The trials of treatment,
And the fear of loss,
We are constantly reminded how to hope.
We are shown hope in the eyes of a ballerina who longs to dance,
In the smile of a princess who just wants to be pretty,
And in the face of an angel who knows she can fly.
In her fragile state, she knows more strength than the mightiest of men....and she knows she can win.

Please continue to pray for Grace and what has become an incredibly long list of friends who have joined the fight. Also, please continue to check www.savegrace.com for updates and information about the Grace Oughton Cancer Foundation's upcoming events. The Foundation's role in our community has broadened greatly and we are excited about it's future. I am also personally joining the fight against cancer. I have joined a team to ride in the Pan Mass Challenge on August 4th and 5th. This event consistently raises over 25 Million per year to help support all facets of the Jimmy Fund and the Dana-Farber Cancer Institute. I have committed to raise over $3500 to ride in this event and I am thrilled to be a part of it. I will send out more information if anyone is interested in making a donation for the team.

God Bless and we'll write again soon.

The Oughtons

March 21, 2007 at 05:18 PM EST

Hello Everyone,

We are still in a holding pattern regarding the next step of this process. The scans were sent to Sloan Kettering so that they can be reviewed by the surgeon. We are waiting to hear whether or not Grace will receive another round of chemotherapy prior to the surgery or if they will move the date up and just get it done. We have also heard nothing from the insurance company regarding the authorization for surgery at MSKCC. Hopefully all of these things will culminate in a successful sugery with minimal stress on all parties involved. Anyone out there think that will happen?

Yesterday was a very long day for Grace and Crystal in the pheresis lab. They both arrived at the Jimmy Fund Clinic at 8:15 for the first of a set of three rectal swabs to clear the whole VRE thing up. Then it was off to apherisis. Grace did amazingly well sitting in the bed and watching movies with Mommy all day. The last fifteen minutes, were a slightly different story. Grace began to feel sick, look pale, then subsequently vomitted all over herself and Crystal. Thankfully "the boys" had just arrived from Richmond, so Crystal was able to clean up (and get a new shirt out of the deal...it's the little things). Anyway, Grace an Landon were very happy to see each other. It was really sweet. Even today they were still loving on each other. They "honeymoon" will be over at some point, but we will enjoy it while it lasts. We were expecting the need to return to the pheresis lab today because we were told by all the doctors that, after transplant, kids don't typically pherese well. Last night, however, we received a phone call from the nurse saying that, in only four hours, they had collected three times the amount of cells needed. Way to go Grace!! What an amazing young lady.

The next couple of months hold a lot in store for our princess. Surgery, radiation, chemotherapy, and, ultimately, another remission are all necessary before she can enter the Antibody Clinical Trial. All of these things are dangerous for anyone, but are particularly dangerous for Grace because she has already had to endure so much. The location of the tumor coupled with the internal scarring as a result of the radiation will make the resection a complex surgery and an immensely stressful event for our family. This is the next major event in her treatment regimen. Please focus your prayers on that event. Please pray for the surgeons, the anesthesiologists, the nurses, and the radiation oncologists as they prepare for this event. If you get a chance, pray for us too.

The Oughtons

March 20, 2007 at 04:48 PM EST

03-18 Update

Good Day,

Well we have had quite a week (or has it been longer). Grace finished her chemotherapy on March 2nd, but as we wrote in the previous update continued to have fevers and the severe rash. They did not let up until the end of the following week. Her tests did come back revealing that she had, at least, a colonization of the Vancomycin Resistant Enterococci in her intestines. She began treatment for this although it was very unlikely that this was the cause of the fevers and rash. Her urine came back clean. The biggest problem with these bacteria is that she is required to be on isolation… meaning no more playroom. After a few days on a variety of antibiotics, Grace’s fevers and rash began to subside. Grace has had low-grade fevers on and off throughout the admission, but the blood cultures have not grown anything. We are attributing the earlier ones, and the rash, to the Topotecan (one of the chemo drugs). There was never really any other reason for them. We think the later ones could have just been her body fighting off little things as her counts came back in. We’ll see how she does from here out. Grace’s WBC count today was 2.7, so the doctors were comfortable that Grace has the capacity to fight off most things, at least until we could get in for antibiotics, and were comfortable discharging her today. As soon as the little princess heard she was getting out, she perked up and was a whole different kid. She tolerates the hospital well, but it is obvious that she would rather be elsewhere. So much has happened over the past couple of weeks that we could never put it all in this update. The rash, the fevers, the naso-gastric tube conversations (a feeding tube), the room swap, and trying like heck to get the insurance stuff worked out with Sloan Kettering has left us all exhausted. We are tired, but excited to be temporarily free of the hospital.

Hopefully very soon, we will have detailed information about the next steps. The repeat CT scan was completed last Thursday, March 15th. While we have not received the official radiologist report, we have had discussions about it with Dr. Shusterman (our primary oncologist at DFCI). She told us (after the “I’m not a radiologist” disclaimer) that it appeared as thought the tumor had shrunk about 40%. We were encouraged by this news, although the tumor has not pulled away from the aorta and vena cava at all (these are the major blood vessels in the abdomen that send and receive blood to and from your legs). They also noticed something in her vena cava. There was some discussion about what it could be. Some hypothesized that it was a blood clot that formed as a result of tumor compression restricting the blood flow, while others speculated that it might be a part of the tumor actually inside the vessels. The latter doesn’t make sense to us being that the area of highest “chemo-concentration” is in those vessels. If the chemo killed a lot of the tumor outside of the vessels, how could more grow in an area of high chemo-toxicity? The first theory is not great either, but nobody seems overly concerned about it right now, so we have been told that they will discuss it in Tumor Conference on Tuesday and give us more information after that.

The scans are being sent to MSKCC (Sloan Kettering) to be reviewed by Dr. Kushner. He will discuss the results and, in conjunction with our DFCI oncologists, they will make a decision about whether or not Grace will get a second round of chemo, or if she will go straight to surgery after her counts recover more and she is pheresed. A tentative date for surgery was set for April 11th, only after we agreed to wire them a large sum of money. They were waiting on insurance approval before scheduling, but no decision has been made yet regarding whether or not the surgery will be approved at MSKCC. We are worried about another long appeals process and we realized the need for surgery as soon as possible, since Grace’s marrow will not endure the multiple rounds of chemotherapy that she would need to keep the tumor in check until it could be resected. If the money would lift the scheduling hold and keep Grace’s therapy on the tight schedule that is so critical for this treatment regimen, we were more than willing to front it. Please know that without the foundation that you created, we would have been in a whole different situation. We’ll see what happens with the insurance approval process and we will keep you informed about their decision. We hope they make the same decision that they made with Boston…the right decision.
Thanks for all of the calls and emails. We still know how many of you are out there praying for and supporting our family and we could never express how thankful we are that you haven’t forgotten our family.

We’ll write again very soon.

The Oughtons

March 03, 2007 at 02:04 PM EST

Hello All,

You know, we should know better than to throw out the Law of Averages statement. Not two minutes after we pressed the send button to post the update, the doctors came in and told us that Grace's liver enzymes were five times what they were the day before. Obviously, this was not news we wanted to hear and we began to run through all of the concerns in out heads... would she be able to continue the chemo... was the VOD coming back... we thought this chemo wasn't toxic to the liver... and so on. The physicians weren't overly concerned at values in the low 200's, but we immediately asked that her abdominal girth and weights be monitored closely. In fact, the test was done because Crystal noticed Grace seemed to be having severe headaches, a symptom we had only seen during the VOD. Crystal is unbelievably "in touch" with our daughter. We also asked that there be a review of the meds (other than chemo) that she was on to determine if any were metabolized in the liver. After review, the antibiotic, Ceftriaxone (Rocephin), appeared to be a possible culprit. She was transitioned to Cefepime, an antibiotic she has been on before, and over the last two days (knock, knock) her levels have dropped to a point that they are no longer following them (big, cautious sigh).

Grace's fevers have continued, and actually elevated, despite treatment with the Cefepime and the newly added Vencomycin. She has also developed a head to toe, hot, itchy rash that has made the poor girl completely miserable. She is on benadryl, nubain, and some topical creams to try and ease the itching, but little seems to help other than the constant scratching provided by us. They continue to look for sources of the fever and Grace is not the only one scratching her head because of the rash. So far, she has over 96 hours of clear blood cultures and fungal cultures, but a urine culture from two days ago grew out Enterococci, a GI bacteria. They are repeating the urine culture today to ensure that it was not a contaminated specimen, or to see if there was a reduction in the bacterial count if it is still present. One of the doctors concerns with consi