Journal History
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Tuesday, December 5, 2006
Hello Friends,
Finally, time to sit down and do an update. This is a wonderful time of the year, but it is also a very busy time of year.
As of today, Morgan has been off treatment for 1 year, 7 months, 2 weeks, and 6 days. She is 1382 days post transplant. It is hard to believe how far she has come. We certainly give God all the praise, honor and glory for blessing Morgan with renewed good health.
As you may already know, the annual Lunch for Life campaign is in full swing. This is a grassroots effort by neuroblastoma to raise awareness and funding for this terrible disease. Neuroblastoma gets very little money from the federal government or from organizations like the American Cancer Society. Therefore, some very active parents started the Lunch for Life Campaign. All money donated goes directly to finding treatments and hopefully a cure for neuroblastoma. As of today, $114,185.00 has been raised by this year’s campaign. The premise of the campaign is for a donor to give $5.00, approximately the cost of lunch for one day. Then, that donor asks five or more friends to donate $5.00 as well. That donor asks five more people to donate, and so on.
Please consider making a donation in honor of Morgan. We are blessed by how well Morgan is doing, but sadly too many children with neuroblastoma are not doing as well. It would be great if in the future, every child with neuroblastoma could be cured. Go to LUNCH FOR LIFE and locate Morgan’s Giving Tree. Her code is 19649. Thanks in advance for your help.
The highlight of November for our family was our trip to New York on the 6th through the 9th. We were once again blessed by hearing that wonderful news that Morgan remains NED. We will return for more scans in May and if everything looks good at the that point Morgan, will start doing scans once a year rather than once every six months. That is both very exciting and very scary.
Otherwise, it has been an uneventful month. Holden had a dentist appointment on November 1 and is once again a member of the “No Cavity Club”. He continues to play basketball, and is doing a good job in school (most of the time). He loves his teachers and going to school. He also loves going to Awanas on Wednesday nights.
Lyndon is doing great as well. She is getting so big. She is a very happy and easygoing child. She loves her babysitter and is happily dropped off every morning. She has cut some new teeth recently and that has provided for less sleep than Mommy and Daddy like, but otherwise she is doing great.
Morgan is doing terrific as well. She is happy in school. She has friends and is doing well academically. Holding her back and placing her in private school was one of the best decisions that Jerry and I ever made. She has a small role in the school Christmas play so she has been quite busy with play practice, Awanas and dance class.
All three kids are fighting the cold virus right now. But, if that is all we have to complain about at our house, then life is good. I never thought that our lives would ever be able to return to normal after we received the devastating news that Morgan had cancer. We are blessed – no doubt about it.
Of course, we are gearing up for Christmas. All of our shopping is done (I think) and the tree is up. Lights and candy canes adorn the front of our house. We have already made our first trip to the Festival of Lights at Tanglewood and have been to two Christmas Parties. One was Jerry’s office party and the second was the party that is sponsored byt the oncology support group at Brenner Children’s Hospital. The first party was just for the adults, but the entire family had a terrific time at the Brenner Party. We got to see our friends, the Cains. They are such a blessing and it is so nice to see how well Grace is doing. We also saw our friend Nicholaus Chase . Nicholaus seemed to be doing well, even though he was recovering from a recent surgery. We also finally got to meet Brandon Koontz’s mother in person. All three of these children are very brave Neuroblastoma Warriors and an inspiration to our family.
Thanks so much from continuing to check in on Morgan and the rest of our family. You guys have been so faithful to us with your love and support. Please sign the guestbook and let us know you were here.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
God Bless,
Allison
Thursday, November 9, 2006
UPDATE NOVEMBER 26
PLEASE MAKE A DONATION TO LUNCH FOR LIFE IN HONOR OF MORGAN. THIS IS A COPY OF THE EMAIL I SENT OUT TO PRACTICALLY EVERYONE IN MY ADDRESS BOOK:
Hi Friends and Family,
Children's Neuroblastoma Cancer Foundation for the fourth year is doing Lunch for Life. It is to help raise funds for a deadly childhood cancer. All they are asking is for you to "give up" one lunch and donate that money to Lunch for Life. As you may remember the premise of this campaign is that one person donates $5.00 (the cost of a lunch) and then asks five friends to donate $5.00. Those five friends ask five friends, and it just keeps going. This campaign has been very successful in raising money to fight neuroblastoma, a very deadly yet under funded childhood cancer. This is basically a grassroots effort by parents of neuroblastoma children to raise money.
A little over three years ago, my daughter Morgan was diagnosed with neuroblastoma. Since her struggle began I have been greatly impacted by the other families who are fighting this disease. Morgan is currently winning her battle, but sadly most children with neuroblastoma are not. I have realized and seen with my very own eyes the sadness and hopelessness childhood cancer can cause. This is an easy opportunity to help offer hope!! If you are interested in donating your "lunch" please go to LUNCH FOR LIFE . Find Morgan Barnes’ Christmas tree and donate in her honor. In the giving code part please key in 19649. Entering this code will give Morgan credit even if you donate in another child's name (both children will receive credit).
Morgan I thank you in advance for donating in her honor. This is a wonderful Christmas gift to all fo those children who are bravely battling this disease and to the families of children who were taken from us because of neuroblastoma. Hopefully, in the very near future more children will be able to call them NEUROBLASTOMA SURVIVORS.
UPDATE NOVEMBER 10
Dr. Kushner's office just called to say that all of Morgan tests came back showing no evidence of neuroblastoma. This includes the bone marrow biopsies. Praise God! Thanks so much for your continued support through prayer.
Hello Friends,
BE SURE TO CHECK OUT THE NEW PICTURES IN THE PHOTO ALBUM!
Morgan has now been off treatment for one year, seven months, three weeks, and four days. She is 1357 days post transplant.
I guess this update is better late than never. I was honestly going to do it on the first of November, like I usually do. However, when I realized on November 5 that I still had not done it, I decided to wait until after our NY trip to do it.
I will start with some good news. We have the results of Morgan’s CT and MIBG scans. Both show NO EVIDENCE OF DISEASE! Praise God! We don’t have any results from the bone marrow yet, but I will post them as soon as I get them. Please pray that they will also reveal good news.
October is a fun month. We managed to keep ourselves very busy this month. Holden and Lyndon both had October check-ups. They are both doing great. Holden is average height and very solid. Lyndon is in the 90th percentile for height and in the 40th for weight. She is tall and skinny (unlike her mother).
I have managed to be ahead of the game and go ahead and have the kids’ Christmas pictures taken. I like beating the rush. Photo studios are pretty crazy close to Christmas. The one above is the best we could get. It is very difficult to get all three of them to look in the same direction and be smiling.
Holden’s basketball season is now underway. He has played two games and he seems to like it. He doesn’t quite have a grasp of what is going on – but he enjoys being on the team. He is the youngest and the smallest child on the team.
The two highlights of the month of October were on the 28th and29th. On October 28, Brenner Children’s Hospital had their Fall Fun Day at Camp Victory Junction. It is nice to go to that and see some old friends from when Morgan was in active treatment. The next day, Make a Wish had their reunion at Carowinds. The kids had a ball. The weather was beautiful and the day was perfect.
While things under our own roof were great in October, it was once again a difficult month of our extended family made up of lots of other children who are fighting neuroblastoma. James Runde relapsed this month. James is from Greensboro. He was treated at Brenner, Duke, and MSKCC (just like Morgan). Carter Finger is still receiving treatment and his family is still waiting for him to be NED. His family is currently in New York and may have to be there for six months. We did get a chance to visit with them while we were in NY. They are such a delightful family! Joshua Freerksen had some suspicious spots show up on his recent scans. Lana Beth Webster became an angel. Lana Beth and Morgan shared a room once while they were both doing antibodies. And, a little girl from Winston Salem was just diagnosed with neuroblastoma. I spoke with her parents just afterwards and they were both super nice and doing a terrific job investigating all of the treatment options available for her. Her name is Lillie Boyte. And finally, another one of our Forsyth County buddies, Nicholaus Chase just found out that he has some moderate heart failure as a result of treatment for neuroblastoma. Nicholaus was diagnosed in 1993 and his mother used to be the principal at Center Grove and really helped us make the decision to send our kids to school there. Please keep all of these precious children in your prayers.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
God Bless,
Allison
Monday, October 2, 2006
Hello Friends,
BE SURE TO CHECK OUT THE NEW PICTURES IN THE PHOTO ALBUM!
Another month of 2006 has passed us by. Autumn is in the air in North Carolina. I just love this time of year. I love the mild temperatures, the fall foliage, and football games. September is another month full of celebrations for our family.
Morgan has been off treatment for 1 year, 5 months, 2 weeks, and 2 days. She is now 1318 days post transplant. Each and every day that Morgan survives without this terrible disease is truly a gift from God and we rejoice in what He has done for our family.
One of the exciting things that we did this month was to take Holden to a Wake Forest football game. My co-worker (and friend) hooked us up with some free tickets to see Wake’s opening game against Syracuse. Morgan let us know very quickly that she had no desire to go to a football game so she and her little sister spent the evening with Grandma Vicky, which is one of Morgan’s favorite past times. We took Pawpaw to the game in Morgan’s place and it was really an enjoyable evening. The weather was great and Holden enjoyed watching all of the festivities that accompanied the game. He was happy that Wake Forest won, even though he originally told his dad that he was going to pull for Syracuse. Holden is developing an affection for pulling against his dad when it comes to sports. He is now a big Tony Stewart fan, even though Jerry does not care for the Home Depot car. I got Holden a Tony Stewart hat for his birthday and am now joining Holden in pulling for that orange car. Fortunately, Holden is still pulling for our Carolina Panthers, just like his dad does. In fact, he just got a new Jake Delhomme jersey for his birthday from my parents. He asked them for a Jake “Down Home” jersey, which I thought was very cute.
Morgan has resumed dance classes. She is now dancing in a much larger class with older girls. This class is for 7-9 year olds and there are at least 30 girls in the class. Morgan usually tends to do better with younger children, but she seems to be holding her own and is doing pretty well in the class. I guess it is good for her to be one of the younger kids in dance class since she is one of the older kids in her class at school.
One of Morgan’s classmates had a birthday party at the skating rink on September 16. It was amazing to take Morgan and watch the difference in her interactions with her classmates this year compared to the kids in her class last year. She seems so much happier and fits in so much better socially. Holding her back was one of the best decisions that we have ever made. It has been so good for Morgan to finally be a leader in a group of peers. She is excelling in so many ways and we are thankful to the Lord for guiding us in the right direction. Morgan’s old Brownie troop had a get together at Build-a-Bear the same weekend as that skating party. The troop has disbanded since Morgan and a few of the other girls changed schools and no longer participate. I noticed that when she was back with that group of girls who are all older and more mature that she once again had a more difficult time fitting in with the others. This was just further proof to me that we did the right thing for Morgan. Parenthood is full of second-guessing your decisions and I am happy that Jerry and I have finally made one that just feels right.
Holden is still enjoying soccer and the season is very slowly winding down. He has two more games and then he is finished. I am not sure when he will play soccer again because he has already told us that he wants to play football next fall and t-ball in the spring. On October 16, he is going to start basketball. That should be an adventure. Last year, he participated in a skills class at the YMCA for kids 3 and 4 years old, but I am not sure how he will do in a 5 and 6-year-old league. For the past few seasons, Holden has been breezing through soccer because he was one of the oldest kids in the league. He may be in for a rude awakening when he becomes one of the younger kids again.
Holden is still doing well in school and both kids are really enjoying Center Grove. We are pleased with all aspects of the school.
Lyndon is growing up so quickly. She has lost that infant look and is a full-fledged toddler now. The other day I dressed her in jeans and a t-shirt and wondered what had happened to my baby girl. She is learning more new words everyday, but she seems to be a quieter child than my other two. Well, not really. She manages to scream very loudly when she wants to be heard. She now says, “ball”, “daddy”, “mommy”, “hello”, and a few other things. Lyndon is a good baby and very easy during the daylight hours. She is still not a great sleeper. In fact, it is 9:30 pm right now. I put her down an hour ago. Just as soon as I started typing this paragraph, she started crying. I am hoping that she will fall back to sleep very soon. She kept me up quite a bit last night and I am planning on crashing just as soon as this update is done.
The only medical event that we had this month was an unplanned trip to the dentist for Morgan. A few weeks ago, I began pondering the fact that Morgan was over 7 years old and still had not lost any teeth. I read a thread on the neuroblastoma list serve about all the damage that chemo can do to teeth and started worrying about whether or not Morgan has any adult teeth there to push those baby teeth out. The mother of another NB kid, pointed out to me that it is recommended that kids who have undergone high dose chemotherapy should have panoramic x-rays done around age 5 to determine the extent of the damage. Morgan has never had one. I called her dentist and they agreed to do it. I took Morgan in for the x-ray and she is indeed missing two adult teeth and she has one more that is underdeveloped and very small. The good news is that these are secondary molars and towards the back so this should not have any cosmetic effect on Morgan at all. In fact, it may end up working to her advantage because Morgan has a fairly small mouth (not like her mother) and her teeth are somewhat compacted. The teeth that she is missing are the one that orthodontists normally have to remove when teeth are compacted and it is time for braces. This means that it may be easier on Morgan if she does need braces (finally something easy on Morgan – can someone do a cheer for me?!?).
Our big event for the month is that Holden turned 5 on September 28. It is hard to believe that he is already 5. I feel like there is so much that I missed with him since I spent so much time caring for Morgan from the time Holden was 10 months old. Holden is a very sweet and good-natured child. He has a nurturing side that I think may come from the fact that he had to deal with Morgan’s illness even though he had no idea of what was going on. He takes pretty good care of his sister.
We celebrated on his birthday by having cupcakes for breakfast. I went into work a little bit late so I could be spend some time with him before he headed out the door to school. Usually, I leave the house at 6:30, so I am not there when the kids are getting ready for school. Grandma and Pawpaw took a special snack to Holden’s class on his special day and that really made the birthday boy happy. After I got off work, I picked the kids up from school and we took them to Chuck E Cheese to continue celebrating Holden’s big day.
September 30 was my birthday. We celebrated by taking the kids to the Dixie Classic Fair after Holden’s soccer game. It was a lot of fun. I have wonderful memories of going to the fair with my Grandpa Morgan. I love the fair for that reason. The kids had a great time and by the end of the afternoon Jerry and I were exhausted. Jerry does not share my love for the fair, but we still managed to have good time despite his complaining.
We had Holden’s birthday party on October 1. We went to Putt Putt with 18 of Holden’s closest friends. It was a bit hectic, but I think all of the children had a good time. I know Holden did and that is really all that matters since it was his special day. I am a bit relieved that our birthday season is behind us and I don’t have to worry about any more parties until July. Jerry has a November birthday, but he usually doesn’t get a party. His birthday is too close to Thanksgiving to try to work in a party.
We had a big surprise in the van while riding home from Holden’s birthday party. Holden announced, “Morgan’s tooth fell out”. I thought he was talking about a pair of those fake ugly Halloween teeth that Holden won at Putt Putt. When I turned around to assess the situation, Morgan was sitting there holding her baby tooth in her hand with a huge smile on her face. I have not seen Morgan that excited about something in a long time. To say she was thrilled would be an understatement. She came home and made phone calls to her grandparents to tell them the good news. Then, she went on and on about getting her name on the tooth chart in her class. Then, she remembered the Tooth Fairy and got even more excited. I stayed home from work a few extra minutes this morning to make sure the Tooth Fairy found her way to our house last night. She did! Morgan was just as excited about her lost tooth this morning as she was last night. She is certainly growing up on us.
As you can see, we have had a terrific month. However, it has been a very sad month in the neuroblastoma community. There is a group of children who were all diagnosed around the same time as Morgan (the spring through the fall of 2002). September has been a tragic month for that group. First, there is Christi Thomas . Christi was diagnosed in September 2002. She never reached NED status, but she fought so hard and we just knew that she was somehow going to find the miracle that she needed. Sadly, Christi became an angel on September 19. Second, there is Harrison . Harrison has been bravely fighting since May 2002. On September 3, Harrison’s mother posted that for the first time in many years, he was showing disease progression. Carter was diagnosed in November 2002 and he has been fighting the beast ever since. He has been doing active treatment for such a long time now. Morgan was treated at MSKCC with Christi, Harrison, and Carter. Two other precious little girls became angels this month as well. Kaitlyn was diagnosed within days of Morgan. Erin was being treated at Duke. While I never personally met these children or their families, I did know of them through the NB list serve. It is such a tragic disease. Please keep these children and their families in your prayers.
We have already scheduled Morgan’s next set of scans and tests. We will be going to NY on November 6 will return home on the 9th. Morgan will have a CT scan and bone marrows done on November 7 and an MIBG scan on November 8. Please start praying now it will be an easy trip and all tests will show that Morgan still has no evidence of neuroblastoma in her body.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
God Bless,
Allison
Saturday, September 1, 2006
Hello Friends,
BE SURE TO CHECK OUT THE NEW PICTURES IN THE PHOTO ALBUM!
Happy September! I hope everyone had a terrific August. Life is good here at the Barnes house. Morgan has now been off treatment 1 year, 4 months, 2 weeks, and 3 days. She is 1288 days post transplant. We are so grateful to the Lord for the healing that He granted to Morgan.
We started off the month with quite a few medical appointments. I was trying to get everything taken care of before the kids went back to school and I returned to work. Morgan had a hearing test and an appointment with Dr. Kirse, the ENT, on August 1. Her hearing is holding steady. No further loss since her last test. She will now be tested once a year. Dr. Kirse thought her ears looked fine and she has officially been released from his care unless we need him for something. YEAH – another doctor off the long list that we have to see. That is always a good thing.
On August 2 Morgan had an appointment with Dr. Castellino. Dr. Castellino is the late effects specialist for the oncology department at Brenner Children’s Hospital. She thought that Morgan looked great and all of her blood work must have been normal because I have not heard anything back from them stating otherwise. The early puberty issues that Dr. Castellino was concerned with at previous visits seem to have resolved themselves and Dr. Castellino seemed satisfied. Of course, Morgan's growth, development and hormone levels will continue to be checked on a regular basis. We will see Dr. Castellino again in the late winter or early spring.
Lyndon started her “school” on August 7. A lady who lives close by and runs an in-home daycare is caring for her. We are very pleased with the care that Lyndon is receiving. Lyndon cried the first few days she was there, but now she is happily dropped off each morning. I am so thankful that we found an opening at this place. It is the perfect fit for us and is convenient to our home.
Morgan had a dentist appointment on August 8. Once again, her teeth received a clean bill of health. This is amazing to me because chemotherapy often does a lot of damage to children’s teeth. Morgan still has not lost a tooth so I am a bit concerned about what is going on with her adult teeth. The hygienist stated that she believes that Morgan will be missing a few teeth by the time she returns for her next visit. We shall see.
We had one last hurrah for the summer in August. We went back to Myrtle Beach from August 9 – 12. It was a great trip and the kids had a terrific time. We stayed at a hotel that had a water park for the kids so we spent most of our time there and playing in the ocean. It was just a great family experience and a great way to end our summer.
I went back to work on August 15. It is kind of strange being back at work fulltime for the first time since July 2002. I love my job and I am very happy working. But, I must admit that sometimes I worry because life just feels too normal for us. I worry that the rug is going to be pulled out from under us again. Of course, anything is possible but I always try to remember to keep my trust in the Lord that He will continue to bless all three of our children with good health.
Morgan and Holden went back to school on August 16. I think putting them in Center Grove Christian Academy was one of the smartest decisions Jerry and I have made. Both kids are very happy. They are both making friends and have wonderful teachers. Morgan is doing well in school although sometimes she likes to rush through her work and not take her time to do it correctly. This is been an issue for her in the past. Her behavior has been really good so far with the exception of the one day we forgot to give her her ADHD medication before she went to school. Her teacher sent me a note and told me that Morgan’s behavior was totally out of character that day. I know that she does a lot better when she takes her medicine but even I was a bit surprised by how much of a difference it makes with her.
Holden is doing well too. Sometimes he gets a yellow light instead of a green, but so far he has had more days on green than yellow and he has managed to avoid red lights altogether. I am so thankful that we made the decision to delay his starting kindergarten. I do not think there is any way he was ready for kindergarten right now, but by this time next year he should be more than ready.
Holden is doing very well in soccer. At his game last Saturday, he had a hat trick. He scored the only three goals that his team had. He is one of the older kids in the league, so he is very happy with the way he is playing. He just loves being on a team and spending time with his friends. Many kids that he goes to school with play in his league as well. He loves seeing people he knows at the soccer field on Saturdays.
We are gearing up for Holden’s birthday this month. He will be 5 on the 28th. He is growing up so very fast. My birthday is also this month. But, I am no longer growing up I am just growing OLD. I will be 32 on the 30th. (UPDATE: My sister-in-law, Ruffin, just reminded me that I am going to be 33. I guess I am getting so old that I can't even remember how old I am.)
Lyndon is also growing up. She is walking fabulously. She is very easy going and loves to be entertained by her big sister and brother. She still has not EVER slept through the night. I am anxiously awaiting that big milestone. Morgan did it for the first time at 6 weeks, so that completely spoiled me. Holden was not as good a sleeper as Morgan, but he was still much better than Lyndon. I guess part of it has to do with the fact that Lyndon does not have her own room like the other two did. She is a light sleeper and the slightest sound wakes her up. I have to get up at 5:15 every morning to get ready for work. Lyndon is up not long after me every morning. But, that does make it a little easier for her babysitter because she is very tired by naptime.
We have already scheduled Morgan’s next set of scans and tests. We will be going to NY on November 6 will return home on the 9th. Morgan will have a CT scan and bone marrows done on November 7 and an MIBG scan on November 8. Please start praying now it will be an easy trip and all tests will show that Morgan still has no evidence of neuroblastoma in her body.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
God Bless,
Allison
Tuesday, August 1, 2006
Hello Friends,
BE SURE TO CHECK OUT THE NEW PICTURES IN THE PHOTO ALBUM!
August 1 already! July is a month of celebration for the Barnes family so it goes without saying that we have had a pretty terrific month. I can’t believe that it is already time to put a Back-to-School background on the web page. But, it is true in that just 15 days Morgan and Holden (and I) will return to school.
Morgan has now been of treatment one year, three months, two weeks, and three days. She is 1257days post-transplant. Go Morgan! Thank God for the blessing of her renewed health.
Our family was also blessed by being able to attend Camp Debbie Lou in Latta, SC this month. The camp was started by the Richardson family in memory of a family member who lost her battle to cancer as an adult. The camp is for Cancer Kids, but it is pretty unique in that it is for the whole family and not just the child. We had no idea what to expect when we rolled into camp on July 6. Well, we had the time of our lives. There were seven other families there (all from North and South Carolina). The kids were able to ride go-karts, bumper boats, horses; there was swimming, a carnival, scrapbooking, and countless other terrific activities. One of the highlights for Jerry and me was that on Friday night, the camp staff took control of the kids and they sent us to a very nice restaurant for a date. Another highlight was that it gave Morgan the chance to interact with children who either have or had cancer or are the sibling of cancer kids. For once, her social skills seemed to be right on par with everyone else’s. She made friends with a little girl from Boone who is a Wilm’s Tumor survivor. Everything about Camp Debbie Lou was an incredible experience. We send out a million “thank-yous” to the Richardson family for providing this wonderful service to cancer families.
Morgan and Holden have been hitting the Vacation Bible School circuit pretty heavy this past month. They started off at Hopewell Moravian, Grandma and Pawpaw’s church. Then, they spent a week at Center Grove, which is where they will be attending school in just a few short weeks. Then, they went to VBS at Hope Moravian with our neighbors, the Branches. Both kids love going to VBS and it was nice that Jerry and I had a few nights to get some things done around the house.
Our first July celebration was Lyndon’s birthday. She turned 1 on July 19. She is now walking, but she still crawls if she needs to get somewhere quickly. She can say “Mama”, “Dada”, “uh-oh” and a few other words. She is not, however, sleeping through the night. In fact, I don’t think she has really slept through the night EVER. We finally have made a decision regarding where Lyndon will be going when I return to work. We are putting her in an in-home daycare just up the street from our home. Many of my neighbors have sent their kids there and they have all had good things to say. She will start on August 7. This will give her some time to adjust before I return to work on August 15. I thought I was going to be able to pass her off to her teacher with no problem, but the closer the day gets the more anxious I am becoming.
Our second July celebration was Morgan’s birthday. She turned 7 on July 25. I can’t believe she is already 7. We took her to Carowinds, an amusement park in Charlotte, to celebrate. Our friends the McLeods were able to join us and it was a fabulous day.
We had a very small party for Morgan and Lyndon on July 22. It was a very simple affair in the fellowship hall at Hopewell Church. It was a marvelous day!
Our third July celebration was our anniversary on July 26. Jerry and I have been married for 9 years. We celebrated by having Japanese take-out and then Jerry mowed the yard. Are we romantics or what?
And, July 31 brought the fourth anniversary of Morgan’s cancer diagnosis. Each time I looked at the clock on Monday I was able to vividly remember what I was doing at that exact moment four years earlier. Our family has been truly blessed to be where we are today. We praise God daily for the gifts He has given us.
Holden has had a good month too despite his sisters getting a lot of birthday attention. I guess he was just thankful that he got to do a lot of fun things. Plus, he knows that his birthday is right around the corner and he is already making a list of the things that he wants to do. He has started fall soccer practice. I think it is way too hot to be practicing soccer. In fact, here in NC it is really too hot to be doing much of anything except sitting at home. Jerry has decided to come out of retirement and is coaching his team again. This will probably do it for Jerry’s coaching career because the next time Holden plays he will be moving up to the 5 and 6 year old league and Jerry feels like one needs to know more about the sport than he does in order to coach at this level.
We have already scheduled Morgan’s next set of scans and tests. We will be going to NY on November 6 and should spend two or three days there. Please start praying now it will be an easy trip and all tests will show that Morgan still has no evidence of neuroblastoma in her body.
Prayer Requests (I have included some new ones regarding our upcoming trip.):
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
God Bless,
Allison
Sunday, July 1, 2006
Hello Friends,
June was a terrific month for the Barnes family. We have certainly been enjoying lazy summer days. It has been glorious.
Morgan has now been off treatment for 1 year, 2 month, 2 weeks, and 2 days. She is now 1226 days post transplant. Go Morgan and thanks be to God for granting us the blessing of Morgan’s healing.
We have stayed busy in typical Barnes family fashion. We signed Morgan up for swimming classes through the Red Cross during the first part of June. The good part was that these classes were free. The bad part was that participants had to be aT least 6 years old. So, Holden was left out. However, the classes seemed to do the trick. Morgan is now swimming like a fish. And, in typical Holden fashion, he is following his big sister’s lead and is also swimming fabulously. I don’t think he will need to take those classes once he turns 6. The kids really love the water. We have spent a few afternoons swimming with our friends, the McLeod family, at Heather’s grandfather’s pool. Both kids are jumping off of the diving board and fearlessly making their way through the water. Lyndon loves the water too. She has a cute little float and is perfectly content just floating around taking in the action. She is going to be a water baby too!
Back in the winter, we decided that Morgan was just too tired to go to occupational therapy after school in the afternoons so we cancelled OT for a while. Morgan has resumed her therapy sessions with Jami. We go early in the morning ever other Friday and Morgan is doing quite well. It is our goal that she will not have to continue after school starts. One of the main things that Morgan and Jami work on is Morgan’s handwriting. Her handwriting has improved dramatically in last year, but she still has pretty significant fine motor skill issues. However, since Morgan is repeating the first grade, we think that there will not be that much of a discrepancy between Morgan and the other students in her class.
Morgan and Holden took a trip to the beach with Grandma and Pawpaw on June 12. They had a blast and really loved spending some quality time with their grandparents. Jerry and I enjoyed it too but we felt a little lost with just one child around the house. Lyndon will be allowed to attend Grandparent Camp once she is potty trained.
On June 17 Morgan had her dance recital. She is a true performer and she loves being on the stage. Her class danced to “Hakuna Matata” and “Let’s Go Fly a Kite”. Morgan did terrific and it always makes me so proud to sit in the crowd and watch her. It is such an incredible feeling as I sit there and watch her and replay in my mind all that she has gone through in her short life. In some ways, I want stand up and shout “Yes, that is my child. She has survived cancer and is the bravest and strongest person I know”. But, it is also so nice to watch her and think about her being just another little girl. As she stands on stage dressed identically to 19 other children, her scars are not seen and thoughts of hospitals and cancer treatments are a million miles away. She is just like everyone else.
Holden’s soccer season came to an end on June 24. We have several weeks off before fall soccer kicks into gear. Holden’s last game was a memorable. He got into an altercation with another little boy and had to sit out for a while. In Holden’s defense, the other child had been giving Holden a hard time the entire game (at least that is how this mother’s eyes saw it). Holden finally had enough and retaliated by hitting the other little boy with the ball cap Holden was wearing. Both kids were put out of the game. Of course, as parents we felt it was necessary to discuss the incident with him and let him know that it is never proper to hit another child. And, then there is that most secret feeling of pride that comes with watching your child stand up for himself and not back down to a much bigger child. Holden has turned into a pretty good soccer player. But, he has already told us that he plans on playing football as soon as he is old enough.
We left Holden’s last soccer game and headed straight for the beach. We took a short family vacation at Myrtle Beach from June 24 through the 29th. It was a great trip. Morgan and Holden really got into wave riding with those big canvas floats that are always available at the cheesy t-shirt shops at the beach. Lyndon also loved the ocean. Occasionally she would make a break for it and make it down to the water with me fast on her heels. She has learned to crawl fairly quickly. Once or twice a large wave would wash in before I could scoop her up. She LOVED it when that happened. The harder she was knocked down, the harder she would laugh. I guess she will be riding waves by next year’s beach trip.
Lyndon has grown up way too quickly for me. She is crawling around and just on the verge of being able to walk. Morgan and Holden both walked at nine months and I am certainly not in a rush for her to get up and start going, but I don’t think there is anything I can do to stop it. She has four teeth and looks more like a toddler now than an infant. She is such a sweet natured child and looks a lot like her older brother and sister. She is a joy and a blessing.
Of course, we are still living in a cancer world. I still maintain contact with many neuroblastoma families either through Caringbridge sites or through the neuroblastoma list-serve that I participate in. And, in this world there is so much sadness. Many wonderful children have lost their battles recently. Many are showing disease progression even though they are being treated with the most powerful drugs that are available. And, no matter how far we get out from treatment or how normal our lives seem to be there is always that fear in the back of my mind about cancer invading Morgan’s body again. I don’t write about these things much anymore, but they are still on my mind. Especially today because yesterday I learned that SARAH SMITH has relapsed. Sarah was diagnosed a few months before Morgan and she was the first neuroblastoma child that we ever met. I remember one afternoon in August 2002 when Sarah and her mother dropped by our room at Baptist to visit. That visit was one of my first opportunities to learn about this disease and to find out just what was ahead for Morgan. Sarah and her family were very kind to us and we sort of followed their lead as we headed through treatment. We moved into our room at Duke about the time that Sarah was leaving the transplant unit. They are a fine Christian family and they are now faced with some very difficult decisions as they are forced to restart this agonizing journey. Please pray for Sarah and her entire family.
Prayer Requests (I have included some new ones regarding our upcoming trip.):
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
God Bless,
Allison
Thursday, June 1, 2006
Hello Friends,
May was a terrific month for us. Once again, we were blessed with good news following our New York trip. We thank each and every one of you for being prayer warriors for our family for the last 4 years. Yes, in July it will be four years since Morgan was diagnosed with cancer – can you believe it!
Morgan has now been off treatment for 1 year, 1 month, 2 weeks, and 3 days and she is 1197 days post transplant – GO MORGAN!
Holden’s soccer season is once again in full swing. Jerry is not coaching his team this time and I think that is hard for Coach Dad. He has already told me that he misses coaching and plans on doing it next season. It is funny how he complains about it while he is doing it, but then misses it when he is not. Holden is doing well with soccer and has actually gotten pretty good. Now mind you, he is playing in a 3-4 year old league, so he is now quite a bit older than many of the kids in the league. But, he still has his moments of falling down and completely losing focus as to what is going on around him. But, he does have really good ball handling skills. He is also aggressive on the field. Unfortunately, this translates as he sometimes likes to push kids and he loves to “talk junk”. I don’t necessarily see this as good thing when playing in a 3-4 year old league.
Of course, the highlight for the month of May was our trip to New York. We left on May 10 and returned on May 13. We took the Amtrak so we spent most of the 10th and 13th in transit. But, I must say that it was a wonderful trip. Holden and Morgan both really liked the train ride. It was so much better than the train trip we took back in February 2005. Our train did not get stranded at any point in the trip so it only took about 10 hours for us to get to NY. We arrived in NY around 2:00 on Wednesday, so we had plenty of time for some fun before having to be at the hospital on Thursday morning. Unfortunately, we were not able to get a room at the Ronald McDonald House. This was unfortunate for two reasons. First, hotel rooms in Manhattan are very expensive. Second, we did not get the chance to see some of our friends since we were not at the RM House. We spent a lot of time in Central Park on this trip and finally made it to the Central Park Zoo. The kids enjoyed the zoo, but were a bit disappointed because they were expecting to see the animals from the movie Madagascar. We now know that there are no lions, giraffes, hippos, or zebras at the Central Park Zoo.
From a medical standpoint, the trip was a complete success. Morgan had her bone marrow biopsies / aspirates and a CT scan done on Thursday. She also had her MIBG injection on Thursday followed by her MIBG scan on Friday. Morgan has grown 3 centimeters since our last trip to NY in February. That does not seem like a lot, but many neuroblastoma kids have growth issues from chemo so we are thrilled with each and every millimeter that she grows. All of the doctors and nurses thought Morgan looked and acted great. On Friday evening, we received word that the CT scan and the MIBG scan both showed no evidence of disease. We received a phone call the next week that the bone marrows were clear too. Praise God! We will now start going to NY for follow-up care every six months rather than every three months. I am already planning our November trip.
We did have one slightly negative event occur this month. There was a suspected case of mumps at my school. Because of this, I found out that Morgan is still not in compliance with the states for her immunizations. She completed the protocol established by Duke, but that still left her with needing an MMR and a DTAP vaccine in order to meet state regulations. I did not want to take any chances with the possiblity of a mumps outbreak, so Morgan had to have two more shots on May 16. She was not at all happy about this. She quickly pointed out to me that I told her she was finished with shots. Sometimes it is difficult having a child with such a good memory. Well, the good news is that Morgan has now officially had all of her vaccines. And, the case of mumps at my school turned out to be nothing but it was better to be safe than sorry!
Morgan walked in the Forsyth County Relay for Life on May 19. She is now getting an understanding for what the Relay is all about. This year, she proudly walked the survivor lap. In years past, we have had to carry her. She actually strutted this year. We want to thank Tonjua Hall, Morgan and Holden’s former preschool teacher. Each year Mrs. Tonjua organizes a Relay team in Morgan’s honor. Thanks so much Tonjua!
I had a wonderful opportunity on May 19. I was invited to give my testimony at the Ladies Spring Tea at our church, River Oaks Community Church. It was such a blessing to be able to share with others about how wonderful our God is. I used to pray that God would give me the ability to share his Word with others before Morgan got sick. I am not sure what I had in mind when I was praying this prayer, but the story he gave me was unlike anything that I could have imagined. It is certainly not the story I would have picked for myself. But God proved faithful and carried us through an extremely difficult journey.
Morgan has started seeing a new counselor to help her with social skills. Morgan really likes her and I think it is going well. Morgan has come a long way in the last year. She has matured a lot and she is doing somewhat better at interacting with other children. We are so very proud of her.
Holden had his last day of school on May 25. I was kind of sad to see it end. He had such a great time at Lewisville UMC preschool and his teacher, Mrs. Collins, was absolutely terrific. He has been dividing us his time with Grandma and Heather since school got out. Next week, he is going to camp at Center Grove, his new school, for the week. I think he will enjoy that and hopefully it will give him the opportunity to meet some of his new classmates. Morgan does not get out of school until June 9, and I have to keep working until June 16.
Morgan had her last dance class last night. She really did not enjoy dance when the year first started, but she started loving it. She told me recently that she wants to dance until is an adult. I hope she continues to enjoy it. The recital is June 17 and she is looking forward to that. Morgan loves being on stage and performing.
We are all looking forward to the summer. We have a couple of mini vacations planned. I am looking forward to some family time together. Thanks so much for continuing to check on Morgan’s progress and lift her in prayer.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
God Bless,
Allison
Monday, May 1, 2006
ANOTHER UPDATE MAY 17
WE JUST RECEIVED WORD THAT MORGAN'S BONE MARROW BIOPSIES AND ASPIRATES SHOW NO EVIDENCE OF NEUROBLASTOMA. PRAISE GOD! THANKS SO MUCH FOR KEEPING US IN YOUR THOUGHTS AND PRAYERS. WE NOW OFFICIALLY MOVE TO THE SIX MONTH FOLLOW-UP SCHEDULE. GOD IS GOOD -- ALL THE TIME!
UPDATE MAY 14
HAPPY MOTHER'S DAY! I JUST WANTED TO LET EVERYONE KNOW THAT WE ARE BACK FROM NYC. SO FAR, WE HAVE RECEIVED GOOD NEWS ON THE MIBG SCAN AND CT SCAN -- BOTH SHOW NO EVIDENCE OF NEUROBLASTOMA. WE ARE STILL WAITING TO HEAR SOMETHING ON THE BONE MARROWS AND URINE TESTS. I WILL POST RESULTS AS SOON AS I GET THEM. THANKS FOR THE PRAYERS AND KEEP PRAYING UNTIL THE REST OF THE RESULTS ARE IN.
Hello Friends,
April was a fabulous month for us. On April 15, we celebrated Morgan being off of treatment for one year. As of today, she has been off treatment for one year, two weeks, and two days.
The highlight of the month was our spring break beach trip. Morgan and Holden had a nice, long break from school. We went to the beach from April 8-15. It was a glorious vacation. The weather was great and it was just a peaceful time for us. I can’t think of any one thing that made it an extraordinary trip, but that is what it was. We spent the week at Surfside Beach. I love going to the beach in the spring because it is not as crowded. I am so thankful for the opportunity that we had to get away.
As you may remember, I returned to work on April 17. This has been a very smooth transition for our family. Heather is keeping Lyndon and that is working out great. Morgan’s day has not really changed that much because I am only working part time and I am able to leave work each day by 12:00. The biggest difference for Holden is that he stays at preschool for an extra hour many days to attend lunch bunch. He loves lunch bunch. On days that lunch bunch is not available, my parents pick him up. Of course, that is a big thrill for him too. Holden doesn’t go to school on Fridays, so Heather has Holden and Lyndon on Fridays.
On April 18, I had Morgan’s final IEP meeting for this school year. She is progressing quite well and her teacher even commented that she is making some strides socially. Her teachers think that we are not going wrong in our decision to hold Morgan back. There are no issues with her academically, but they agree that it may be best for Morgan to be one of the older kids in her classroom rather than one of the youngest. Morgan and Holden are both getting excited about Center Grove. We visited their church services there yesterday and they were very eager to show their father the classrooms that they will be in next year. I feel really good about our decision and am looking forward to their transition.
On Easter we celebrated our Risen Lord and Savior. We attended the Sunrise Service at Mom and Dad’s church, Hopewell Moravian. This is such a beautiful service filled with wonderful tradition. The last time we went to this service both kids were out of control. We did not even attempt going last year because the thought of the previous year still loomed pretty heavily on our minds. We discussed our expectations with the kids prior to our arrival at the church and it really paid off. Morgan and Holden were a perfect little lady and gentleman. After the service, we went to Grandma Penny’s for lunch. We then went to Walkertown to visit with Grandma Byrd and we ended up back in Lewisville to have dinner with my parents and family. What a joyous day!
Lyndon turned 9 months old on April 19. It is hard to believe that she is so close to being a year old. She had a doctor’s appointment on that day and she is doing great. She is now 18 pounds and 28 inches long. She is in the 95th percentile for height and about the 50th for weight (at least that is what I think they said). Morgan was built the exact same way – tall and skinny. Lyndon had two shots and she handled them quite well. She did not like them, but she did not cry for very long.
Morgan has not been too crazy about attending Brownies recently. In fact, she has not wanted to go since that incident where the troop leaders found her crying in the bathroom. She will not say exactly what happened to her and why she no longer enjoys it. Of course, I am not pressing the issue so Morgan has missed the last several meetings. She did, however, attend the troop’s field trip on April 24. The troop went to Alice’s Place for a tea party. That is where Morgan had her fifth birthday party. I am going to try to post some pictures of this latest party. Morgan seems so grown up now compared to the way she looked at her fifth birthday party.
Holden has resumed playing outdoor soccer again. Jerry is not coaching his team this time. I think it will be good for Holden to play for someone else for awhile, and I think it will be good for Jerry to be able to sit back and relax and watch the games. I know I will enjoy having him on the sidelines as Lyndon gets older and it gets more and more difficult to keep track of all three kids at the soccer field. We have decided to pull the kids out of karate. It is going to be nice having an extra night at home with nothing going on.
Please keep our family in your prayers as we return to New York next week. We are leaving on May 10 and returning on May 13. Morgan will have various tests and scans on May 11 and 12. The whole family is going this time. Holden has been begging to go. He has not been to New York since just before his second birthday, and of course he does not remember much about that trip. We are taking the train to NY because we know that Holden will love that. I vowed to never do that again after our last nightmare on the train, but I am doing it for him. We are going to try to work in some fun things for the kids to do this time and celebrate the fact that this is the last time we will be doing quarterly scans. After this trip, we will not have to go back to NY until November. Of course, those plans are contingent on the fact that all of these scans and tests come back showing no evidence of disease. Please pray that this will be the case for us.
Prayer Requests (I have included some new ones regarding our upcoming trip.):
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
3) Pray that the Lord will provide us with travel mercies as we make our upcoming trip to New York.
4) Please pray that all of Morgan’s upcoming scans and tests will show no evidence of disease.
I am going to try to do another update after we return home from our trip. Please keep praying for good results.
God Bless,
Allison
Sunday, April 2, 2006
Hello Friends,
March was a much less eventful month for us. No ear infections, no stomach problems, no trips to NY. I can’t believe how quickly the month flew by.
Morgan has now been off treatment for 11 months, 2 weeks, and 3 days. It is hard to believe that she started her last cycle of antibodies a year ago this week. We are certainly blessed by God.
The only dealing we had with the medical community this month was an eye doctor appointment for Morgan. Dr. Castellino suggested that Morgan have an eye exam as part of her late effects follow-up. The appointment fell on a day when Grandma and Pawpaw were out of town and Jerry was tied up in meetings at work. This meant that all three of the Barnes children had to go to this appointment. It was hectic and crazy. The good news is that Morgan has 20/20 vision and there appears to be no obvious damage to her eyes as a result of cancer treatment. Those of you who have been following Morgan’s story for a while may remember that prior to going into transplant, it was detected that Morgan has an enlarged optic nerve in her right eye. Back in 2003, we were told that this could possibly be a tumor. We were given the scare of our lives, but you guys were faithful in your prayers and it turned out to be nothing. Morgan still displays this same eye condition. There is a name for it, but I cannot remember what it is. Supposedly, it does not affect her vision or anything else – it just is the way it is. It probably would not have even been detected if not for all of her other health issues. We left the eye doctors office with the instructions to return in one year.
After much thought and prayer, we have made a decision regarding Morgan’s schooling for next year. We have decided that we are not going to send her to second grade. Academically, Morgan is doing fine. Socially, she still lags behind. She has made huge improvements, but we think it would be to her advantage allow her to be with kids who are a little younger. Morgan is a July baby and is not yet 7. Many of the kids in Morgan’s class are already 71/2. This, along with Morgan’s immaturity, has made a big difference for her in terms of socializing with other students. We have also decided that we are going to send her to private school. She will be enrolling at Center Grove Christian Academy in August. We feel like holding her back will not be as traumatic for her if we give her a fresh start in a new environment. There are many reasons why we chose Center Grove. Their views align with our religious beliefs. Morgan will benefit from their small class sizes. Holden will be able to enroll in their preschool program. Also, the former principal at Center Grove has a son who is also a neuroblastoma survivor. Therefore, the staff is familiar with the disease. Jerry and I are at peace with our decision and we feel as if this is where the Lord wants our children to be.
Another bit of surprising news is that I am returning to work on April 17. In order to send our kids to private school, I must work. I was planning on returning to work in August. However, a position became available at Southeast Middle, the school I worked at previously. I am going to do a long-term sub position (part time) until the end of the school year. I am hoping that this will lead to a permanent, full time position in the fall.
Holden is doing very well in school. His teacher told me that she has seen some real improvements in him since he started at his new school in February. His behavior has improved dramatically. Lyndon continue to grow up way too quickly. She has one tooth now and just started crawling a few days ago. She will be up and running before we know it.
Morgan and Holden only have to attend school two days this week and then we can start enjoying Spring Break. The kids get a nice long break and they will return to school on April 17. I am really looking forward to spending some quality time together since I will be returning to work the same day they return to school.
We hope that all of you have terrific Easter. Who His own self (Jesus Christ) bore our sins in His own body on the tree, that we, being dead to sins, should live unto righteousness: By whose stripes ye were healed
1 Peter 2:24
I have already made arrangements for Morgan's next set of scans (so you can already start praying for good news). We will be traveling back to NY on May 10. Morgan will have various scans and tests on May 11-12 and we will return home on May 13. I will be posting more about this in my next journal entry. Jerry and I are taking the kids and we are hoping to do some fun things while in New York. Holden has only been once and he was too young to remember it. He is very excited that he is going to be going along too. We want to make this is special trip because it will be the last of Morgan's quarterly scans. After this set of scans, she will start doing testing every six months rather than every three. Another reason to praise God!!
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
3) Pray that all three children will adjust well to my returning to work.
God Bless,
Allison
Wednesday, March 1, 2006
UPDATE MARCH 9
I just wanted to let everyone know that we had Morgan's urine restested and everything came back within normal range. I got the email yesterday and forwarded it to Dr. Kushner. I think he was a thrilled as I was. He amazes me. He is so much more than a wonderful doctor. Thanks to all of you who prayed for us.
More good news about childhood cancer -- I got this email today: I am pleased to let you know that the Conquer Childhood Cancer Act of 2006 was introduced today in the US Senate and in the House of Representatives. There was a press conference held on Capitol Hill this morning to officially introduce the Bill.
This Bill is one step in the process of securing federal funding sufficient to support the research of the COG. Many of the families you have worked with in your hospitals, clinics and community organizations have been actively involved in the advocacy needed to get to this point.
Hello Friends,
February was certainly a very crazy month. To be the shortest month, it sure did seem long to me for some reason.
Morgan has now been off treatment for 10 months and two weeks.
We finally got in to see the pediatrician and get Morgan started on ADHD medication. She is taking 5 mg of Ritalin twice a day. It seems to be helping her out. We are only giving it to her on school days. This plan is working out well for now. Hopefully, things will continue to improve for her and we will not have to make any major modifications to her medication. One of the most common side effects of Ritalin is that it affects the appetite. This has not been a problem for Morgan. She is eating as much now as she ever did. I am seeing that at times she gets a bit emotional over very small issues. For example, she disappeared at Brownies the other day. When the leader finally found her in the bathroom, Morgan was crying uncontrollably. She said that she started crying because she remembered something mean that one of the boys in her kindergarten class said to her. We are not sure if this was the true cause of her tears or if something else happened. Therefore, we can’t say for sure if the medicine is making her more emotional or if something else is going on.
On the 15th, Morgan had her semi-annual hearing test. She did a great job. Her hearing is continuing to get better in her right ear. This may be a direct result of Ritalin in that she is now better able to focus on the test. She is going to have another hearing test in six months and if all goes well with that one, she will be tested once a year. On the 16th, we met with Morgan’s ENT doctor. We had to wait an incredibly long time to see him. Morgan did much better with the waiting than she has done in the past. No complaining, no outbursts, she was a perfect angel. Dr. Kirse said that both of her ears looked great. He also said that after one more six-month follow-up, she can be put on a yearly schedule.
We spent most of the day at Baptist Hospital on the 15th. After Morgan’s hearing test, she had an appointment with Dr. Castellino, the late effects specialist. This included Morgan’s yearly echocardiogram. I assume that all of her heart studies were fine because no one has told me otherwise. Some research is now being done that indicates ADHD medications can cause heart damage. We know that some of the chemo drugs Morgan received can cause heart damage, so we really need to stay on top of this aspect of Morgan’s health. Our appointment with Dr. Castellino went just fine. She had various blood tests to check her hormone levels. I have also not heard back from any of those tests so I am once again assuming that no red flags went up anywhere.
The 15th of February was really a crazy day. After spending a long time at Baptist with Morgan, I went to my parent’s house to pick Holden up. When I arrived, he told me that his ear hurt. I left Morgan with Mom and Dad and took Holden to see the pediatrician. Of course, I had been dragging Lyndie from pillar to post all day long – poor baby. Holden was diagnosed with an ear infection and bronchitis. Of course, this involved a prescription for antibiotics and a long wait at the pharmacy.
The following Friday night, I could tell that Lyndie was just not feeling well. So on Saturday morning Jerry and took her to the doctor while my parents kept Morgan and Holden. (Where would I be without them?) Lyndie was also diagnosed with an ear infection and she was given a prescription for Amoxicillian.
On Sunday, Morgan’s Sunday School teacher told me that Morgan acted like she did not feel well during class. By that evening, she was running a slight fever. And to make life even more chaotic, Holden started throwing up on Sunday. So on Monday morning, it is back to the doctor with all three kids in tow. Jerry took a sick day to help me drag three sick kids to the doctor. Morgan was diagnosed with an upper respiratory infection and it was never determined just what made Holden sick. While we were there, I found out that the office had recently gotten in a shipment of flu shots. I went ahead and had them give Lyndie a shot since she was too young to get one when the other two kids got there’s.
Monday, February 20 was a big day in the Barnes’ house. It marked Morgan’s three-year transplant anniversary. It was also a day of reflection for me. Morgan has come so far and is doing so well in many ways. Of course, cancer has changed her forever and there are lots of pieces that still need to be picked up. She is sort of like a fragile vase that has been broken. We can use the super glue to put her back together again but there will always be cracks that are visible to those who know what they are looking for. We are very thankful that God healed her and we know that He will help us in all the things that need to be done for her in the future.
February 20 was also the day that we were scheduled to fly to NY for quarterly scans and tests. At 3:15 I was heading to Heather’s house to pick her up. One of the schedulers at MSKCC called to tell me that the hospital would not have the MIBG isotope to do Morgan’s injection on Tuesday. She asked me if I wanted to cancel the whole trip. I was like, “Do you realize that I am heading to the airport at this very moment?!?”. The problem was that the can not get the isotope in the day after a holiday and Monday was president’s day. I was just a bit upset because I am sure that they knew Monday was a holiday when these plans were made. It isn’t like someone decided on Friday afternoon, “Hey let’s have a federal holiday on Monday”. She told me that they could probably work something out for Morgan to have the scan later on in the week. I did not like that answer either so we decided that I would discuss it with Dr. Kushner upon our arrival at clinic the next day.
Our flight was delayed for about three hours, we did not get a room at the RM House, and there was a problem with our hotel reservation. What a mess! I was tempted to call MSKCC and tell them that we were finished doing scans and they would never see us again. We finally got to NY, got checked into our room, and then got a little bit of rest. I felt better about things the next morning,
The only tests Morgan had done this time were a CT scan, bone marrow biopsies and aspirates, and the urine tests. Dr. Kushner thought it would be okay to forego the MIBG scan this time as long as everything else checked out clear and we make sure Morgan has one in May. We received word via email that the CT scan and the bone marrows were fine. However, on Monday night the phone rang and I saw the words “Cell Phone New York” appear on the caller ID. I knew that it was Dr. Kushner. I hate it when he calls me because he emails good news and phones with bad news. He started off the conversation by telling me that the bone marrows were fine. However, he is a bit concerned because one of Morgan’s urine markers was elevated. Normal is around 14 and hers was around 27. He feels confident that this is not much to worry about, but he would like to repeat the urine test and if it is still high he wants us to return to NY to get that MIBG scan. The first thing I did after hanging up the phone was to quietly cuss the person at MKSCC who could not figure out that getting the isotope after a holiday would be problem. Because without the MIBG scan, we could not ignore these results. Then I got on the computer and went to the neuroblastoma list-serve to search for answers as to why the urine markers may have been high. This particular test is very sensitive to foods. Bananas, vanilla, citrus fruit, Vitamin C, and even some medications can cause a high reading on this test. On the day we did the urine test Morgan had to be NPO due to being sedated for her bone marrow tests. She also had to drink oral contrast for the CT scan. The oral contrast was mixed with cranberry juice, which I believe is high in Vitamin C. When she woke up from sedation, she was hungry and thirsty. I gave her a Hi-C orange juice box (contains 100 f daily vitamin C) and shortbread cookies (contain vanilla flavoring). We were supposed to collect the urine for six hours, but we only collected for about five since we decided to fly home on Tuesday night when the MIBG scan was cancelled. So, there are lots of reasons why Morgan’s urine markers were elevated. I am a bit concerned, but trying not to worry about it too much. I went to the clinic at Baptist today and picked up the materials to do another urine test. This time I will be a little more diligent in making sure Morgan does not consume the food that she is not supposed to consume. Please pray that all is normal with this test and we do not have to return to NY for an MIBG scan.
Life quickly returned to normal after we got home from NY. Morgan and Holden did not go to school on Wednesday. Morgan was exhausted after the trip and Holden was still having stomach issues on Tuesday night. Everyone seemed fine by Thursday.
Holden has started playing soccer again. The indoor season started last week. Coach Dad was pulled out of coaching retirement since the YMCA was having difficulty finding coaches. He is vowing that he will not do it in the spring, but we shall see what happens. Holden’s first game was on the 25th. His game certainly has improved. He played goalie first quarter and did great. He sat out the second quarter and was really into the action in the third quarter. However, Coach Dad had to pull him out because he and a teammate were both heading toward the goal kicking the ball. Holden’s teammate scored. Holden wanted to score the goal so he started crying. The same thing happened fourth quarter. He is a definitely a ball hog.
When we woke up on Saturday morning, I noticed that Lyndie looked a bit pink. On the way to the soccer game I could tell that she was developing a rash. By the end of the game, she was broke out from head to toe. I took her into the convenience care clinic that our doctor’s office has. Unfortunately, the pediatrician left at 1:00 and we arrived at 1:20. This meant that we had to wait behind all of the adults with injuries or sicknesses that got there before us. And, the clinic was unusually crowded on this particular Saturday. We waited for over two hours to be seen. We discovered that Lyndie is allergic to amoxicillian. I was kind of surprised since she had been on it for over a week without showing a reaction, but the doctor said this was not all that uncommon. Her rash gradually got better on Saturday. She was back to normal on Sunday when she woke up. But, the rash returned on Sunday afternoon. It went away completely by Sunday evening and has not returned since. I guess it just took awhile for the medicine to get out of her system.
See, February really was a very hectic month for us. We are hoping for a much more peaceful March. I am praying that everyone stays well and we do not have to spend nearly as much time in doctor’s offices this month. And speaking of prayer, we do have some new requests:
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
2)Pray that Morgan’s repeat urine test will come back within normal range so that she does not have to have an MIBG scan.
3)Pray for the Lord’s guidance for our family in regards to my returning to work and in making decision regarding our children’s education.
God Bless,
Allison
Friday, February 3, 2006 11:53 AM CST
UPDATE FEBRUARY 22
We are home a little early. It was one of those hectic trips that seemed plagued with problems.
First of all, they called me as I was driving to the airport on Monday to tell me that they could not get the MIBG isotope in time to give Morgan her injection on Tuesday. The secretary told me that they would want to reschedule later in the week. I told her not to bother since we were scheduled to fly home on Wednesday night. Plus, we had already been informed that we did not have a room at the RM House. Since I was paying quite a bit more than $20 per night I was really not interested in extending our stay. The secretary told me I could discuss it with Dr. Kushner after I arrived in New York.
And, I forgot to mention that for the last few days I had been dealing with three sick children. Holden told me on Wednesday that his ear hurt (after I had spent the whole day with Morgan seeing various doctors at Baptist Hospital for follow-up visits). He had an ear infection and bronchitis. On Saturday, it was obvious that Lyndon was not feeling well so we took her in and got her an antibiotic for an ear infection. On Sunday, Holden was sick on his stomach and Morgan developed a high fever. We took both of them back to the doctor on Monday. Morgan has an upper respiratory infection and Holden's vomiting is unexplained. He has had a few more episodes, but acts like he is feeling fine.
Our flight out of Greensboro was delayed almost three hours. I called our hotel to confirm that I would be checking in late and they told me that I did not have a reservation. I prepaid for my reservation through Expedia so then I had to take care of that problem. Fortunately, that just involved a few quick phone calls.
Yesterday, Morgan had her CT scan and bone marrow biopsies / aspirates. We met with Dr. Kushner and he did not feel that the MIBG was all that pressing since she just had one three months ago and she is now three years post transplant. He does want to do one in May. This will be the last time she has quarterly scans and in May we will switch to a six month schedule. He gave us the go ahead to return home. I called the airline and got us booked on a flight out last night. We got home last night after 11:00 and it took another hour for Morgan to get herself wound down enough to go to sleep. Plus, Holden got sick again soon after my arrival home. Since everyone had a very late night, Morgan and Holden stayed home with me today.
But, I did just receive an email from Dr. Kushner. The CT scan was fine. Praise God.
Thanks for the prayers. I will post the bone marrow results after I get them.
Hello Friends,
January certainly passed us by very quickly. I am a few days late in posting this update. This has been a very busy week for us. Morgan has had a lot of appointments and I feel like I have driven 1000 miles across Forsyth County.
Morgan has now been off treatment for nine months, two weeks, and five days.
On January 4 and 13, Morgan had the last two sessions of her neuropsychological evaluation. We met with the doctor on the 23rd to discuss the results. No big surprises really – Morgan has ADHD. She also has had some slight brain damage to the right side of her brain, which causes sensory perception issues on her left side. We are not sure if either problem is a result of the cancer treatment since no baselines were taken before all of this started. My own personal opinion is that she would have had ADHD anyway but the brain damage is a result of chemo. The plan is to start her on medication for ADHD. She had an appointment with her pediatrician on Tuesday. I took her in only to have them tell me that the doctor was not in and she could not be seen by another doctor for this issue. I rescheduled for Wednesday. They called Wednesday morning to tell me that he was not going to be in on Wednesday either. So, the plan is now for me to take her in today after occupational therapy. I keep waiting for the phone to ring to receive the message that they can’t see her today either. If we find that medication is not helpful, then the plan is to evaluate her for Asperger’s Syndrome.
We are considering enrolling Morgan in the Montessori School. We think that her learning issues may be best addressed in this type of environment. We had her annual IEP meeting on the 24th. She has placed out of speech services. The teachers were very concerned about her ability to focus and the difficulty she is having in math. The plan is to continue with occupational therapy through the school because she has not really had a lot of progress in this area. She will also start being pulled out for math. Morgan visited the Montessori School for half the day this past Wednesday. She got to spend time in the classroom. She did well and she really liked it. I spoke with the teacher afterwards and she feels like Morgan is a good candidate for the Montessori School, even though she will be a challenge (her words, not mine).
Holden started at a new school this past Monday. He was attending Reynolda Presbyterian Preschool and we were very happy with it. However, I learned that there was an opening at Lewisville Methodist. This new school is a five-minute drive from our home, compared to the 30-minute drive to Reynolda. Holden seems very happy with the change. I am happy that I am not spending quite as much time in the car. Before Holden left Reynolda, we met with his teachers to discuss whether or not he is ready to start kindergarten in the fall. We decided on the day Holden was born that he would not start kindergarten his first eligible year. He will not be five until September 28 and we want to “red shirt” him for a year. His preschool teachers agreed with this decision. He just needs to mature a bit more. He will either attend a kindergarten readiness program at Lewisville Methodist next year or go to the Montessori School. We regret that we did not hold Morgan back for a year. She would be doing a lot better in school if this were her kindergarten year rather than her first grade year. We were so ready to get her back into a normal lifestyle and we really thought that the best thing for her was to go ahead and start her. Hindsight is 20/20!
Lyndon is doing great. She had her six-month check-up and weighed in at 17 pounds 10 ounces. She was 27 ½ inches long. She is still a great eater. The only thing I have discovered that she doesn’t like is carrots. She is still a Mommy’s girl and gets distressed if I am out of sight for too long. She also has not developed good sleeping habits yet. She hates to nap and is still not making it through the night yet.
We are just over 2 weeks away from our trip to New York for scans and tests. We will depart Greensboro at 6:00 on February 20. This is Morgan’s three-year transplant anniversary. Morgan will have a CT scan, bone marrow biopsies, and an MIBG injection on February 21. On the 22nd, she will have her MIBG scan and we will leave NYC at 8:00 that night. Heather is going with us and Grandma and Pawpaw are staying home to take care of Holden. Lyndon will be making her first trip to the Big Apple since she is still nursing. Please pray for safe travel, decent weather, and good news on all of the scans and tests.
Our family has a lot of big decisions coming up and we are asking for prayer to grant us wisdom. We need to make a decision regarding our children’s education for next year. If we send Morgan and Holden to the Montessori School, then I will have to return to work in order to be able to afford tuition. This means finding suitable care for Lyndon. Please pray that everything works out for us according to God’s plan.
Thanks so much for continuing to check on Morgan’s progress.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
God Bless,
Allison
Sunday, January 1, 2006
Hello Friends,
Happy New Year! Another year has passed us by and here is another chance for us to have a fresh start. 2005 was a terrific year for our family. Morgan finished treatment, Lyndie was born, and Holden continued to be our terrific little guy. The Lord blessed us in 2005 and we are praying for more blessings for everyone for 2006.
Morgan has now been off treatment for 8 months, 2 weeks, and 2 days.
I want to thank all of you who donated to Lunch for Life in Morgan’s honor. As of today, the campaign has raised $117,248.85 to help fight neuroblastoma. Morgan had a total of 308 ornaments on her tree. Thanks so much to everyone who pitched in. Wouldn’t it be great if by January 1, 2007 we had wiped this horrible disease off the face of the earth and we weren’t losing any more children (or adults) to neuroblastoma.
December is always such a festive month. I am kind of sad to see the holiday season end. Morgan returns to school tomorrow and that we will return to our normal routines. Getting back to normal is good, but holidays and vacations from work and school are pretty terrific too.
Our month started off in the partying spirit when we attended the annual Christmas Party for the oncology department at Brenner Children’s Hospital. This was only the second time we were able to attend due to Morgan being in New York for treatment for the last two years. It was amazing to think about how far she has come since we were last at this event. When we attended in 2002, Morgan was bald. She had just had her second major surgery to remove cancer from her body. She still had two more cycles of chemo to go and we still had transplant, radiation, accutane, and antibodies ahead of us. To be honest, that was a pretty depressing Christmas for us. I tried not to think it, but I did wonder that Christmas if it would be Morgan’s last. This year at the party Morgan was 100 ealthy. Nothing about her looked or acted sick. One person asked me if we were members of the church that hosts the event. Another lady asked me which of my kids had been a patient. Morgan had to be reprimanded because she kept sneaking off from the family to explore on her own. From all outward appearances we are a normal family. Of course, normal is relative and there are scars left in all of us. But, the most important thing is that we celebrated this year as a family of five – as a complete unit. We have personally witnessed God’s healing powers and we are so very thankful.
Lyndon had her four-month check-up on December 7. She is doing great. She is a big girl. She weighed in at 15 pounds and was 26 ¾ inches long. She is in the 95th percentile for height and the 75th percentile for weight. She is the size of a 7 month old. She is a terrific eater. I never could get Morgan and Holden to eat baby cereal without mixing it with fruit baby food. Lyndie eats it right up. She also loves applesauce and pears. We have just started experimenting with baby food, which is always fun. We could not ask for a better baby. She is a little spoiled and hates to be away from her mommy for too long, but she is still pretty wonderful.
The kids got an early Christmas present on December 9 when we took them to see Disney on Ice. This year the show was about princesses and I thoroughly expected Holden to lose interest pretty quickly. He surprised me by being exceptionally well-behaved. He really is a good boy. He is all boy, and sometimes he can be a handful but he is very good natured. He has had some difficulties at school recently with listening, getting along with others, temper tantrums, etc. I think part of this goes back to the emotional scars left in all of us by Morgan’s cancer diagnosis. Holden was only 10 months old when Morgan was diagnosed with cancer. He never really did know normal. He stayed with so many people and has endured long periods of separation from his mother and sister. He does not remember Jerry and myself as the carefree people we were before we heard the word neuroblastoma for the first time. I just pray everyday that my kids grow into happy, well-adjusted adults. Parenting is such a hard job. We had no idea what we were getting into. It is wonderful, just very very hard.
Morgan had the second part of her neuropsychological testing on December 14. She will have part three on January 4 and it will be finished on January 13. So, I guess in my February update I will let everyone know what is going on with her in that department. Morgan is still behind socially. I think she has made a lot of progress since the beginning of first grade, but she still has a long way to go.
Morgan’s class had their Christmas party on December 21. I was thankful that I could attend since this is really my first school year as a fulltime stay-at-home mom. I got to Morgan’s classroom while they were still at lunch. The look on her face when she walked into the room and saw me was so precious. She was so pleased to see me that she did not have to say a word. That look was truly a Christmas present to me.
Holden’s basketball adventures came to an end this month. We are still trying to decide if we are going to sign him up for indoor soccer. We have some time to think about it.
Our family had a terrific Christmas. We celebrated with Jerry’s family on Christmas Eve. Santa paid a visit to our home and left lots of goodies for the kids. We spent Christmas Day with my side of the family. Christmas is so wonderful when you are looking at it through a child’s eyes.
We had a very low key New Year’s Eve. Somehow, the kids managed to stay up until midnight. We popped open a bottle of sparkling cider and had a little family toast. It was really sweet. We spent today at my parent’s house enjoying a traditional southern New Year’s meal. Jerry and I made sure we ate our collard greens and black-eyed peas to ensure financial security in the coming year. It is the only day each year that Jerry eats collard greens.
Please remember our family in your prayers as February approaches. We will be traveling back to NY for Morgan’s quarterly scans on February 20. I am making the journey this time. My good friend, Heather, will be accompanying me. I am planning to take Lyndie since she will still be nursing. Please pray for good weather (last February a blizzard hit NY), travel mercies, and for Morgan’s scans to once again come back showing no evidence of disease.
Thanks so much for continuing to check on Morgan’s progress.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
God Bless,
Allison
Thursday, December 1, 2005
Hello Friends,
PLEASE CHECK OUT THE NEW PICTURES IN THE PHOTO ALBUM!
PLEASE MAKE A DONATION TO LUNCH FOR LIFE IN HONOR OF MORGAN. THIS IS A COPY OF THE EMAIL I SENT OUT TO PRACTICALLY EVERYONE IN MY ADDRESS BOOK:
Hi Friends and Family,
Children's Neuroblastoma Cancer Foundation for the third year is doing Lunch for Life. It is to help raise funds for a deadly childhood cancer. All they are asking is for you to "give up" one lunch and donate that money to Lunch for Life. As you may remember the premise of this campaign is that one person donates $5.00 (the cost of a lunch) and then asks five friends to donate $5.00. Those five friends ask five friends, and it just keeps going. This campaign has been very successful in raising money to fight neuroblastoma, a very deadly yet under funded childhood cancer. This is basically a grassroots effort by parents of neuroblastoma children to raise money.
A little over three years ago, my daughter Morgan was diagnosed with neuroblastoma. Since her struggle began I have been greatly impacted by the other families who are fighting this disease. Morgan is currently winning her battle, but sadly most children with neuroblastoma are not. I have realized and seen with my very own eyes the sadness and hopelessness childhood cancer can cause. This is an easy opportunity to help offer hope!! If you are interested in donating your "lunch" please go to LUNCH FOR LIFE. Find Morgan Barnes’ Christmas tree and donate in her honor. In the giving code part please key in 13705. Entering this code will give Morgan credit even if you donate in another child's name (both children will receive credit). The exciting part is that for every $5.00 donation she gets in her honor she is entered for a chance to win an all expense paid trip to Disney World (and other prizes). Your $5.00 could send her to Disney.
Hello Friends,
December already! Christmas is closing in fast and we will be saying good-bye to another year before we know it.
Morgan has now been off treatment for seven months, two weeks, and two days. On November 17, I glanced down at my calendar and noticed that this was a very special day. On this day, Morgan was 1000 days post-transplant. Yes, I still keep up with it in my calendar. I guess I always will.
I guess everyone knows that the highlight of November for us was Morgan’s trip to New York for quarterly scans. Once again, we received news that she remains NED. Thank you Jesus! We have been so blessed and we sincerely thank each and every one of you for your faithful prayers and the continuous support that you have given our family. I have already scheduled her next set of scans. We will be returning to NY on February 20, which is Morgan’s three-year transplant anniversary. On February 21, she will have a CT scan, bone marrow biopsies, and an MIBG injection. On February 22, she will have the MIBG scan. Please go ahead and mark these days on your calendar. We still need prayer that this disease will never again return to her body.
This month has not been as busy for us as the last few months. With the holidays, some of our normal activities were cancelled, which was kind of nice. Due to scheduling conflicts, Morgan did not see her counselor at all and she only went to occupational therapy once. Due to the NY trip, a slight illness and the holidays, Morgan only went to dance class once. It was nice having a few extra nights at home with no obligations.
Holden is still playing in his little basketball league. It is really more like basketball lessons because they do not play games. That will be coming to an end on December 8. He has gotten much better. He dribbles the ball pretty well for a four year old. His attention span is still lacking at times, but he does okay.
On November 16, Morgan went in for the first part of her neuropsychological testing. This testing requires several sessions and we will not get any of the results back until it is all over. Morgan’s next appointment is on December 14 and then she has another one on January 11.
Our family had a wonderful Thanksgiving. We celebrated at lunch with Jerry’s side of the family at his sister’s house in Greensboro. And then we came back to Lewisville for dinner with my family. It is so nice to have all of our relative close-by. Traveling with three kids is not easy.
Lyndon is still doing terrific and she is such a sweet baby. She is so easy. I guess she understands that she is number 3 so there is no need to cause a big fuss about things, because she will probably be ignored anyway. I think she is going to be a singer, she loves to squeal and she can get quite loud at times. She is rolling over quite well now and experimenting some with eating cereal. She has her next appointment with the pediatrician next week.
Don’t forget to donate to Lunch for Life in Morgan’s honor. The last time I looked, she already had 206 ornaments on her tree. I have been enjoying looking at the site and seeing who all is donating. I thank each and every one of you.
I guess I won’t do another update until January 1, 2006. I hope that your family has a wonderful Christmas. Give you children an extra special hug on Christmas and think about those families who are facing another holiday without their precious children.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
FUNDRAISING INFORMATION
I STILL HAVE ABOUT 10 COOKBOOKS LEFT. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE. THESE COOKBOOKS MAKE WONDERFUL CHRISTMAS GIFTS!
God Bless,
Allison
Tuesday, November 1, 2005
UPDATE NOVEMBER 23 REGARDING LUNCH FOR LIFE
PLEASE MAKE A DONATION TO LUNCH FOR LIFE IN HONOR OF MORGAN. THIS IS A COPY OF THE EMAIL I SENT OUT TO PRACTICALLY EVERYONE IN MY ADDRESS BOOK.
Hi Friends and Family,
Children's Neuroblastoma Cancer Foundation for the third year, is doing Lunch for Life. It is to help raise funds for a deadly childhood cancer. All they are asking is for you to "give up" one lunch and donate that money to Lunch for Life. As you may remember the premise of this campaign is that one person donates $5.00 (the cost of a lunch) and then asks five friends to donate $5.00. Those five friends ask five friends, and it just keeps going. This campaign has been very successful in raising money to fight neuroblastoma, a very deadly yet underfunded childhood cancer. This is basically a grassroots effort by parents of neuroblastoma children to raise money.
A little over three years ago, my daughter Morgan was diagnosed with neuroblastoma. Since her struggle began I have been greatly impacted by the other families who are fighting this disease. Morgan is currently winning her battle, but sadly most child with neuroblastoma are not. I have realized and seen with my very own eyes the sadness and hopelessness childhood cancer can cause. This is a easy opportunity to help offer hope!! If you are interested in donating your "lunch" please go to LUNCH FOR LIFE. Find Morgan Barnes Christmas tree and donate in her honor. In the giving code part please key in 13705. Entering this code wii give Morgan credit even if you donate in another child's name (both children will receive credit). The exciting part is that for every $5.00 donation she gets in her honor she is entered for a chance to win an all expense paid trip to Disney World (and other prizes). Your $5.00 could send her to Disney :)
UPDATE NOVEMBER 9
I just wanted to let everyone know that I got an email from Dr. Kushner this afternoon. He informed me that all of Morgan's tests from last week, including the bone marrow biopsies and aspirations, showed no evidence of neuroblastoma. PRAISE GOD!
I replied to the email by telling Dr. Kushner we would start planning our trip in February to do the next set of tests. He told me I was not to leave clinic until he personally examined Morgan. Like I have said many times, I love it when Morgan is not one of his priority patients. This means that she is healthy!
We are so blessed by God. Thank you so much for your continued prayers. We hope your family has a wonderful Thanksgiving and look for another update at the beginning of December.
UPDATE NOVEMBER 4
Morgan and my parents returned home from NYC around noon today. She had a grand time. They took her to see an off-broadway play and she was invited up on stage to dance and "help" the performers. She has artistic blood in her, unlike her mother and father. Maybe it came from one of her many transfusions!
My cell phone rang after 5:00 this evening as I was chatting on my other line. Of course, I checked caller ID and did the "It is Dr. Kushner Freaking Out" thing. He was calling (not emailing) and it was after 5:00 -- couldn't be good.
I was relieved to hear a female's voice and an apology that Dr. Kushner was not able to see Morgan while she was up there this time. MIBG and CT scans show no evidence of disease -- praise God! I told her to tell Dr. Kushner that we like being on his low priority list and he does not need to apologize.
Have a great weekend and thanks fo much for your continued prayers and support!
Hello Friends,
Make sure you check out the new pictures in the photo album!
Morgan has now been off treatment for six months, two weeks and three day!
As I write this update, Morgan and my parents are in New York. Mom and Dad have stepped in to help us out once again. It is easier for Holden and Lyndie if I stay at home so Morgan went to New York with Grandma and Pawpaw to have her quarterly scans. They hopped on a plane at 10:00 this morning. Each time I have talked to them, it sounded like they were having a good time. The real fun will start tomorrow. They will arrive at MSKCC bright and early in the morning. Morgan is scheduled for a CT scan at 8:20 a.m. Then, she will have the MIBG injection at 1:45. She will have an MIBG scan and bone marrow biopsies and aspirates on Thursday. They will return to NC on Friday. Please pray for Morgan during the next two days. Ask that all scans and tests reveal no evidence of disease.
October was a happy month for us. Things slowed down a bit and we were not quite as busy as we were in September. We had a lot of fun and made some great memories. On October1, Brenner Children’s Hospital had their fall fun day. This year it was at Camp Victory Junction. Wow – what an amazing place. Morgan and Holden had a blast fishing and riding horses. It was also nice to see some old friends from our days of active treatment at Brenner.
The second Saturday in October we drove to Spencer, NC for “A Day Out With Thomas the Tank Engine”. Holden is a Thomas fanatic. He was beside himself with happiness and did not even notice the torrential rainfall that was pounding down on us for a large part of the day. We got soaked, but it was worth it to see him so happy.
Holden’s soccer season came to an end on October 13. He has improved so much since he first started playing. He even scored a few goals this season and finally seemed to grasp the concept of what the game is all about. He is doing Little Dribblers now. This is a basketball program at the YMCA. They don’t play games or anything. They just practice basketball skills. It is a father / son program and Holden is really enjoying it. I am enjoying once again having the ability to sleep in on Saturdays without having to get up for soccer games. Who am I kidding? I don’t actually get to sleep in, but at least I don’t have to get up and go anywhere after the kids wake us up on Saturday mornings.
Morgan is staying busy with dancing, karate, and Brownies. She and Holden are no longer in the same karate class. She was moved into the next level and he stayed in Little Dragons. Morgan does not really like karate. We are keeping her in it because we think it will be good for her. She needs to increase her stamina, strengthen her legs, develop more self-esteem, increase her self-discipline, and numerous other skills that karate can provide for her. However, she does not try very hard so I am beginning to wonder if it is even worth her time. Morgan is fiercely independent and strong-willed. These are her two of her greatest attributes. She fully understands that she has to go to karate, but she also fully understands that no one can force her to actually participate. So basically, she goes to class and leans on a poll for the duration.
October was a bit of an emotional month for me in regards to Morgan’s schooling. She has finally started to make attempts to join in with the other kids in her class. Unfortunately, the other students have not really been that receptive to her awkward attempts. She does not have many friends and has no idea of how to go about making them. This bothers me a lot more than it bothers Morgan. Again her independence shines through. She is perfectly content entertaining herself on the playground if she can’t join in with the others. Morgan is happy. She likes school and does not seem to be all that concerned with what other people think about her. She is so resilient and I admire her so much. As her mother, it breaks my heart to think of her eating lunch everyday by herself, playing by herself on the playground, and having other kids refer to her as “that weird kid”. I love her so much and am so ready for something to be easy for that child. The last three years of her life have been extremely difficult. So much so, that she does not even have any idea of how hard it has been. Cancer has scarred just about every aspect of this precious child’s life – her body, her cognitive abilities, her social skills. She is working with her counselor on how to improve her social skills. Hopefully, she will start making progress in this area before she gets to the point where being left out will affect her.
Morgan was finally able to have her allergy testing done on October 14. It turns out that she is not allergic to anything. We just have to deal with her chronically runny nose. Compared to what we have already had to deal with, that is nothing.
Morgan’s teacher seems to be pretty concerned about her inability to focus. She is very bright and doing okay in school, but she would be doing so much better if she did not get so easily distracted. I have been reading about educating children with cancer. The book strongly recommends that children who have been treated with chemo and radiation undergo complete neuropsychological testing. Therefore, Morgan will start this long process on November 16. She will undergo about nine hours worth of testing in three sessions.
Dr. Castellino finally got back in touch with us regarding our appointment with her in September. There was some evidence from that appointment that Morgan’s body had perhaps started early puberty. Therefore, complete blood chemistries and hormone levels were checked. Two of Morgan’s hormone levels (I don’t remember which ones) were on the high side of normal. The endocrinologist does not feel that it is necessary for Morgan to see him now, but he does want Morgan to see Dr. Castellino on a more regular basis. Instead of following the original plan of seeing her once a year, Morgan will now see her every four months.
Lyndie is growing so fast. She is such a joy and she has a pleasant personality. She occasionally sleeps through the night but it does not happen often. She is getting more mobile now. She can roll for her back to her side and can move herself into various positions while lying on the floor. She does not get as much floor time as Morgan and Holden did when they were infants because we are concerned about Morgan and Holden stepping on her. They would never dream of hurting her, but they are kids with things on their minds other than where their baby sister happens to be playing. I am really trying to prevent her from walking at nine months like my first two did.
I have started substitute teaching one day a week. It has been really good for me to get out of the house once in a while. I am surprised by how much I enjoy being back in the classroom. When I was teaching, I was so focused on becoming a counselor that I swore I would never teach again after I finished my degree. However, I have really enjoyed being back in a classroom. However, subbing is much different – no grading papers, no dealing with testing, paperwork, none of any of those things that caused teaching to stop being fun. I get to spend some time with kids and then I get to go home and I get a little extra money for doing it. I have also started selling Tastefully Simple products. I am not going to use Morgan’s page to advertise, but if you would like more info email me.
And that about wraps up the last month in the lives of the Barnes family. Hopefully, I will be posting an update soon that says everything came back fine with Morgan’s tests. Until you get that message, please pray for Morgan every time she crosses your mind.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease. NEUROBLASTOMA WARRIORS
FUNDRAISING INFORMATION
I STILL HAVE ABOUT 10 COOKBOOKS LEFT. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE. THESE COOKBOOKS MAKE WONDERFUL CHRISTMAS GIFTS!
God Bless,
Allison
Saturday, October 1, 2005
Hello Friends,
Make sure you check out the new pictures in the photo album!
October already! Wow, it will be Christmas before we know it. Time flies by so quickly. Morgan has now been off treatment for five months, two weeks, and two days.
September was a very busy month for us. I am looking back at my calendar now in order to do this update. I think just about every day had something written in that we had do. My goal for October is to slow down a bit. We have to cut some things out of our schedules. The kids will be finished with this session of swimming lessons on October 6. We are going to take a break for a while. The kids are doing something every night of the week. They love swimming but I think we are going to try to go to the YMCA more during the free swim hours and let them practice without being enrolled in a class.
Morgan now has her first month of first grade behind her. For the most part, she is doing well. Very rarely does she complain about having to go to school. Sometimes it was a struggle getting her out the door for kindergarten. I think she is happier this year. Her behavior in class seems to be better too. There are still days when she talks too much, and days when she refuses to do part of her work or does it very carelessly and messy because she does not want to do it. However, her pin is not being moved as much this year and she comes home with a lot of smiley faces in her notebook. Academically, she is doing well. I think reading and spelling are her strongest subjects. She loves reading and her phenomenal memory makes spelling pretty easy for her. Her mathematical mind seems to be more like her mother than her father. I was never good at math but Jerry has a Masters degree in math and is now teaching math part time at the community college. Morgan does not seem to love math and does not seem to put a lot of effort into it. I was in high school before math made any sense to me. I am hoping that Morgan will catch on before that. I had a conference with Morgan’s teacher earlier this month. I am still very impressed by her. She understands Morgan very well.
Morgan had an appointment with Dr. Kirse, the otolaryngologist on September 6. You may remember that her audiologist has concerns that Morgan needs a tube in her right ear due to frequent ear infections. Dr. Kirse does not think this is necessary at this point. He thinks the ear looks fine. He wanted to correspond Morgan’s next appointment with him to her next hearing test. It seems as if she always has an ear infection or problem in her ear when she is tested. This causes her hearing tests to show a more profound loss in the right ear but the audiologist does not think this is accurate due to the ear problems. Hopefully, at her next appointment all will be well with her ears and the audiologists will be satisfied with the results of the hearing tests. Dr. Kirse did suggest to us that we take Morgan for allergy testing. We are coming to believe that her chronic runny nose is the result of allergies. She had her first appointment with the allergist on September 30. Unfortunately, the person who scheduled the appointment failed to tell me that she was not to take any allergy medications for seven days prior to the appointment. Morgan has been taking Claritin on a daily basis for quite some time. Since she was still taking the Claritin, I have to take her back to the allergist on Thursday. I was not very happy about this at all.
Holden started preschool in September 7. He goes three hours a day three days a week. Holden loves school. He is doing well and eagerly heads out the door each morning that he has to go. Holden has always been such an easygoing child that I don’t find it surprising that he has adjusted so well to school. He just always seems to go with the flow.
The dance season has started again. Morgan had her first dance class on September 8. Morgan loves dancing. This year she is dancing at a new studio. This one is a little closer to our house. With gas prices and three children, I just could not drive too far away anymore for dance classes. This studio is only a few miles from our home. It is working out well because one of Morgan’s classmates is in her dance class. Morgan still has some issues with her social skills so this is working out for the best for her.
We have added another doctor to the long list that Morgan sees on a regular basis. Morgan had her first appointment with a late effects specialist on September 21. Dr. Castellino is the new doctor on the oncology team at Brenner Children’s Hospital. This appointment involved a lot of testing on Morgan to make sure her body has recovered properly from the treatment she received. Everything from her hormone levels to her blood chemistries were tested. There is a chance that Morgan will also have to start seeing an endocrinologist based on the results of these tests. We don’t have results from this visit yet. We ran into Dr. Castellino at a family fun day today sponsored by the oncology team. She told me she would call me this week with all of the results. Morgan will continue to see Dr. Castellino every four months.
Another new development for Morgan is that she is now seeing a counselor. Having cancer can be a very traumatic experience. Morgan has been left with a lot of issues. In order to help her come to terms with this, she is seeing a counselor on a weekly basis. She has only been three times. We are just ready for things to be easy for her and we hope this is a step in the right direction.
Morgan made the transition this month from Daisy Scout to Brownie. She is excited about her new uniform and selling cookies, something that Daisies do not do. I will be in touch with all of you when cookie sells start!
Holden’s soccer season is winding to a close. He is still enjoying playing but I think he is ready for a break. He has basically been playing continuously since indoor soccer started in January. He has improved a lot since then but he still has his moments where he would rather roll around on the ground than play soccer.
This has been a big month for Holden. He turned 4 on the 28th. We had his party at the Little Gym on the 25th. He had a wonderful time. He is such a big boy now and I can’t believe he is already four. I feel like there is so much I missed out on with him due to Morgan’s illness. I thank God each day that He gave Holden such an easygoing personality. His nature surely made things a lot easier for us. Tomorrow the all of his grandparents are coming over for lunch and to celebrate Holden’s birthday. I think the grandparents enjoy this a lot more than the controlled chaos that comes with birthday parties with lots of hyper children.
Lyndie is now 2 months old and getting bigger every moment. She had a check-up on the 19th. She is up to 12 pounds and 24 inches. She is an easy baby and the only time she cries is when she is hungry. I think that she is going to be a thumb-sucker. She is constantly trying to get her hands into her mouth. Her hand control is getting better but she does not quite have it mastered yet. She is also starting to babble back at us when we talk to her. She is still not sleeping through the night, which means that Jerry and I are still functioning on a limited amount of sleep. We are tired, but she is so worth it. She is smiling a lot more now and melting our hearts. She has a short period just about every night where she get fussy and the only thing that will make her happy is to be in Mommy’s arms. I cherish that because I know it will be over way too soon.
All in all, we are doing very well and have no complaints. Morgan is dealing with a lot of post-treatment issues and while we wish that she did not have them, at least she is here with us. Of course, scan time is right around the corner now and things will be getting tense around here as each week passes. Morgan will be returning to NY on November 1. She has a CT scan and MIBG injection scheduled for November 2. She will have the MIBG scan on November 3, along with bone marrow biopsies and aspirates. She will come home on November 4. Please pray that all of these tests and scans will reveal no evidence of disease.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the children who are battling this horrible disease.
FUNDRAISING INFORMATION
I STILL HAVE ABOUT 10 COOKBOOKS LEFT. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Thursday, September 1, 2005
Hello Friends,
(Be sure to check out the new photos in the photo album!)
August certainly flew by in the blink of an eye. Morgan has now been off treatment 4 months, 3 weeks, and 2 days.
We have slowly been adjusting to having a third child in our family. Lyndie is a sweet baby. She loves to eat, sleep and be held (right now I am typing with one hand and holding her with the other). If she is not doing one of those three things, there is a good chance she is crying. She seems like she is going to have that same demanding personality that her big sister has. That’s okay, it will get them far in life.
Morgan had her 6-year check-up on August 2. She checked out just fine. She is growing like a weed and the pediatrician did not have any concerns about chemo and radiation affecting her growth at this point. Morgan is in the 55th percentile for height and the 75th for weight. When I took her in, the doctor commented that the inside of her nasal passages looked like a cold or some sort of allergic reaction was coming on. He was right. She had a cold for the entire month of August. She is just now getting over having a nasty runny nose. It is still running, but at least it is clear now.
Our Little Princess participated in Princess Dance Camp the second week in August. For five days she did tap dancing, ballet, jazz, and some gymnastics. The week ending with a Princess Celebration complete with a crown and wand that Morgan made. It was a lot of fun for her.
Morgan had another hearing test that same week. She has once again astonished the medical community. Morgan’s hearing loss that came from the chemo has somehow recovered. Her audiologist stated that this does happen, but it is rare. The audiologist was still concerned about the issues in Morgan’s right ear. Of course, she had a cold so that eye was slightly affected and Morgan’s hearing was actually a bit worse in that ear due to the cold (but not in the high frequencies caused by chemo). We have another appointment with Dr. Kirse, the ear specialist, next week. The audiologist really thinks Morgan needs a tube in that ear. We shall see what the doctor thinks.
Morgan and Holden have had another belt test in karate. They now have purple striped belts. They only have two more levels until they have reached the highest level belt in the Little Dragons program. Morgan is already old enough to move into a regular karate class. We will probably do that after she gets her black striped belt. Holden will stay in Little Dragons until he is 6. I guess he needs to slow do with the belt tests for a while.
The kids are back in swimming class again. They both love the water and are pretty fast learners. This class is a bit more challenging for Morgan. Her first class was a 3 to 5 year old class. Since she turned 6 in July, she moved into a 6 and up class. She is now one of the younger and least experienced swimmers in the class. I think she will continue to do well simply because she loves the water so much.
Morgan is officially a first grader now. Her first day of school was August 25. So far, Jerry and I are very impressed with her teacher. She seems very organized, but also very loving and caring. Morgan seems to like her, but in typical Morgan fashion we still get the “I don’t want to go to school” routine in the morning. Yesterday, Morgan complained that her foot hurt. Today it was her leg. Of course, this puts some worry in the back of my mind, even though I am practically positive that this Morgan’s way of getting to stay at home on the couch all day doing as she pleases. Morgan does not have any problems after she gets to school, it is just the getting her there that is a problem. She is completely worn out in the afternoons when I pick her up. So we have an additional 30 minutes of Morgan Moodiness. I am hoping that this will get better as Morgan’s body adjusts to the routine of school again.
The Third Annual Morgan Barnes Benefit Golf Tournament was held on August 26. Once again, it was a tremendous success. I took the kids to the course after Morgan got out of school and they had a good time. I think their favorite thing was riding on the golf cart. Jerry’s co-workers do such a good job putting this thing together. They have been so supportive of us since Morgan was diagnosed with cancer and our family is truly appreciative.
Holden is playing soccer again. This time, his daddy is not his coach. Holden has finally developed awareness for what is going on on the field and is turning into a talented little player. Holden will be starting preschool after Labor Day. He is looking forward to it and I think he is growing bored here at home. He asks me all the time when his sister is coming home from school. We are going to his open house tonight to meet his teachers.
Lyndon is growing like a weed. She is now 6 weeks old. I took her for her one month check-up on the 25th and she was 10 pounds 6 ounces and 23 inches long. She is getting up once or twice every night to eat. The longest she has gone was five hours, but that does not happen that much. Jerry and I are learning to live on just a few hours sleep. Morgan and Holden are crazy over their little sister. Morgan especially cannot keep her hands off the baby. I am still waiting for the jealousy to show up, but so far Morgan and Holden are just rolling with the flow of having a new baby.
We have already scheduled Morgan’s next set of scans. I wanted to do it early so that we could get it done during Morgan’s fall break from school. My parents are going to take her again since that will not disrupt the lives of Holden and Lyndon. They will fly to NY on November 1. Morgan will have a CT scan and MIBG injection on November 2. On November 3, she will have bone marrows biopsies and aspirates drawn and the MIBG scan. They will fly home on November 4. Morgan will miss two days of school, but that is better than missing four. Please start praying now for the Lord to bless this journey and for all of Morgan’s tests and scans to show no evidence of disease.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION
I STILL HAVE ABOUT 10 COOKBOOKS LEFT. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Monday, August 1, 2005
Hello Friends,
Check out the new pictures in the photo album!
I woke up on August 1, 2002 in a hospital room after learning the night before that my three-year old daughter had a terrible cancer called neuroblastoma. Of course, I had no idea just how hideous this disease was. Yesterday marked the three-year anniversary of Morgan’s cancer diagnosis. Three years ago I could not even begin to envision what life what be like in three years. We have been blessed by God. I now have three healthy children and if you think my hands are full, you should see my heart. We have no idea what tomorrow holds, but right now we are in the midst of rejoicing over the miracle that the Lord performed in Morgan.
Morgan has now been off treatment for three months, two weeks, and three days.
July was a very busy month for us. But, we are thrilled to say that it was a month full of much happiness and celebration.
Morgan and Holden completed their swimming lessons and both received high marks. I am trying to find time in our busy schedules to enroll them in some more classes. So far, that is not working out but I am hoping that by the fall, we will have some free time in our schedules.
Morgan and my parents traveled to New York on July 12-15 so Morgan could have her quarterly scans. The highlight of Morgan’s trip was that she got to see Hairspray on Broadway. The highlight of the trip for us was that all of Morgan’s scans and tests came back showing no evidence of disease. We can breathe a little easier for another three months. We will have to take another trip to NYC in October to repeat the scanning and testing process.
We spent a good part of our month celebrating Morgan’s sixth birthday. She had her first party on July 16 at the Winston Salem Children’s Museum. It was great fun. Then, on July 23 we had a quiet pizza party with just the grandparents. Morgan kept asking us when she was having another party. We are partied out, but we did manage to take the kids to Chuck E Cheese on July 29 for one last birthday celebration. Poor Holden is beginning to feel like Morgan’s birthday celebrations are never going to cease. We will have to make things extra special for him in September when he turns four.
Our other big news story for the month was our new addition. Lyndon Victoria Barnes was born on July 19 at 9:42 pm. When I went to the doctor the day before, they discovered that I had too much amniotic fluid and decided that an induction would be the safest way to deliver the baby. We arrived at the hospital around 2:00 in the afternoon and the whole process took just under 8 hours. Lyndie and I are both doing great. She likes to sleep a lot. I would like to sleep a lot, but right now that is just not in the plans of my children.
Morgan went to the dentist on July 27. Her teeth got a clean bill of health this month. No cavities! Morgan did not get any teeth until she was well over a year old, so we are expecting that she will also be delayed in losing teeth. I must admit that I am anxious to see how her adult teeth developed with the mega doses of chemo that she received.
We have two special prayer requests. The first is for our friend James Runde . James’ father works with our brother-in-law, Jody. James also has neuroblastoma and he will be going to Duke for transplant around the middle of August. Right now, he is doing his pre-transplant work-up. Also, pray for Brandon Koontz . Brandon is also a neuroblastoma warrior and he is a student at the school where my brother is an assistant principal. He was also due to go to transplant, but his bone marrow tests came back positive for the disease. His family is meeting with doctors at MSKCC and Children’s Hospital of Philadelphia to determine the next step in his treatment plan.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION
THE THIRD ANNUAL MORGAN BARNES BENEFIT GOLF TOURNAMENT IS CURRENTLY BEING PLANNED BY JERRY'S WONDERFUL CO-WORKERS. IT WILL BE FRIDAY, AUGUST 26 AT REYNOLDS PARK GOLF COURSE. IF YOU WANT MORE INFORMATION, EMAIL ME AND I WILL SEND YOU A COPY OF THE FLYER.
I STILL HAVE ABOUT 10 COOKBOOKS LEFT. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Friday, July 15, 2005
ANOTHER SHORT UPDATE
JULY 22
Morgan's bone marrow biopsies show no evidence of neuroblastoma -- Praise God! The aspirates are not in yet, but the biopsies are more thorough of the two tests.
UPDATE JULY 21
Lyndon Victoria Barnes arrived at 9:42 p.m on Tuesday, July 19. She weighed 7 pounds 13 ounces and was 21 3/4 inches long. Look for more details and pictures later!
No word yet on Morgan's bone marrows. Keep praying for good news.
UPDATE JULY 18
Morgan's CT scan and MIBG scan are normal -- Praise God! Now we are just waiting for the bone marrow and urine results. Keep praying for good news.
Lyndie is still not here yet.
Hello Friends,
This is just a quick update to let everyone know that Morgan and my parents arrived home around noon. Morgan is thrilled to be back in North Carolina and we feel the same way. We are so appreciative to my parents for taking Morgan to NY. Once again, they have selflessly stepped in to help us out – Thank you and we all love you very much!
From what I understand, everything in NY was pretty uneventful. If you recall, when Jerry and I took Morgan up for scans last July we had to deal with no room availability at the RM House, anesthesia delays, and Jerry spraining his back just as we were heading out of the city. Thankfully, they did not have to deal with anything like that.
Now we are just sitting back waiting for scan results. For some reason, I have a strange
ense of peace about everything. I think it is just relief in having Morgan home again. Keep praying for good results and I will post them as soon as we hear something.
Thankfully, Lyndon is still in a holding pattern. I really did not want her to come while her big sister and grandparents were away. Now, I just want her to hold off for another 24 hours so that we can have Morgan’s sixth birthday party tomorrow. After that, she is free to make her debut at any time.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION
THE THIRD ANNUAL MORGAN BARNES BENEFIT GOLF TOURNAMENT IS CURRENTLY BEING PLANNED BY JERRY'S WONDERFUL CO-WORKERS. IT WILL BE FRIDAY, AUGUST 26 AT REYNOLDS PARK GOLF COURSE. IF YOU WANT MORE INFORMATION, EMAIL ME AND I WILL SEND YOU A COPY OF THE FLYER.
I STILL HAVE ABOUT 15 COOKBOOKS LEFT. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Friday, July 1, 2005
UPDATE JULY 7, 2005
HEATHER IS ONCE AGAIN GOING TO ORGANIZE A PRAYER VIGIL TO MAKE SURE MORGAN AND THE REST OF OUR FAMILY IS COVERED IN PRAYER DURING MORGAN'S SCANS NEXT WEEK. IF YOU ARE INTERESTED IN TAKING A TIME SLOT PLEASE EMAIL HER AT SJMCLEOD06@BELLSOUTH.NET
ALSO, THE THIRD ANNUAL MORGAN BARNES BENEFIT GOLF TOURNAMENT IS CURRENTLY BEING PLANNED BY JERRY'S WONDERFUL CO-WORKERS. IT WILL BE FRIDAY, AUGUST 26 AT REYNOLDS PARK GOLF COURSE. IF YOU WANT MORE INFORMATION, EMAIL ME AND I WILL SEND YOU A COPY OF THE FLYER.
Hello Friends,
NEW PHOTOS HAVE BEEN ADDED TO THE PHOTO ALBUM!
Morgan has been off of treatment for 2 months, 2 weeks, and 2 days. It amazes me when I think about the fact that this is the longest we have spent together as a family of four since July 31, 2002. There have been no trips to the hospital, no New York trips, and no other episodes when we had to be separated. It has been so wonderful and we are truly blessed by God.
June was a very busy month for us. On June 4, Morgan had her dance recital. She was on cloud nine. Dancing is certainly her thing. We were all so proud of her when she took the stage for her ballet routine to “Carolina Girls”. Her tap number was amazing. The girls danced to ‘Rock the Hula”, complete with grass skirts. It was my intention to enroll her in a few summer dance camps, but so far our schedule has been way too packed for that.
On June 11, we participated in one of Alex’s lemonade stands. It was a tremendous success and our family is grateful to James and Juli Lamberth, who coordinated the event. Morgan and Holden both enjoyed serving lemonade, although Holden was doing a little more playing than serving. We were honored to be able to participate in this event.
Holden ended his soccer season on June 18 and Jerry ended his soccer coaching on that same day. I think Jerry found coaching his own son to be a bit frustrating. It was not that he expected Holden to be the star of the show, but he would have liked for Holden to be more involved in the games. Holden often would just quit and walk off the field or stop to pet a dog that was sitting on the sideline. Sometimes, he could be found picking flowers. However, Holden loves being part of a team and he spoke of his “teammates” quite frequently. We have decided to allow him to play in the fall season, which starts in July but he will be coached by someone other than his father.
The same day the soccer season ended we took our last vacation as a family of four. We went to Edisto Beach, SC. It is a very quiet, family-oriented beach. It is one of those places where the only entertainment to be found is swimming in the ocean and hanging out by the pool. This was just what we needed. It was so relaxing and wonderful. We were about 45 miles from Charleston, but we did not spent much time there. Charleston is not a place that holds much interest for children as young as ours. It was a wonderful vacation and I hope our children will have some wonderful memories from it.
The kids are now taking swimming lessons at the YMCA. This will end in a week. Neither one of my kids has a fear of the water. You either need to be afraid of the water or know how to swim, or it can be dangerous. They are both doing great. It is so nice to finally have Morgan in some type of sporting activity where she actually excels. She is one of two children in her class who will jump into the water without having to hold the teacher’s hand.
On June 26, our family was blessed by a Pampered Chef fundraiser. It was a wonderful event and very successful. We would like to thank Robin Boger and Page Crater for putting this event together.
Last week, the kids went to Vacation Bible School at Unity Moravian Church, where my Aunt Becky attends. They loved it even more than I expected them to. Jerry and I loved it too because it meant that we had from 5:30-8:00 on Sunday through Wednesday to run some errands. Morgan has already asked me if she can go to VBS at another church. Our church does not have VBS because we are just now building our own church. I am hoping we can find somewhere for her to go, since she loved it so much.
Morgan did have some dealings with the medical community recently. After we came home from the beach, she told me her ear hurt. I knew this meant an ear infection. I took her to see the pediatrician and sure enough, that right ear was slightly red. I was not surprised because her nose had been running and she had been dealing with some cold-like symptoms. We were given amoxicillian and we were sent on our merry way. A few days later, she was still complaining about that ear. This was, of course, a weekend so I called the nurse on call. She said it sounded like swimmer’s ear to her. This was to be expected with the amount of time that the kids have been spending in the water recently. We started eardrops and kept her out of the water for a few days. Morgan will be on antibiotics until Sunday and we now give both kids eardrops after swimming. She has not complained of pain recently, so all is well.
Morgan’s next set of scans has been scheduled. Of course, this increases the level of stress around our home. And, while there are no major issues going on to have us worrying, there is always that nagging fear in the back of our minds. I cannot sufficiently describe this feeling, but anyone who has dealt with cancer before knows exactly what I am talking about. Morgan and my parents are flying to New York on Tuesday, July 12. Mom has already purchased tickets for the three of them to see Hairspray on Tuesday night. I am so glad that Morgan will get to do something fun while she is up there. On July 13, Morgan’s bone marrow biopsies and aspirates will be done. She will also have the MIBG injection on that day. On July 14, she will have the MIBG scan and the CT scan. They will fly home on July 15, just in time to celebrate Morgan’s birthday party on July 16 (we are having it early because Lyndon is expected to arrive a day before Morgan’s actual birthday).
Please be in prayer for our family during those days in July. Pray that the Lord will bless their travels. Ask that all tests and scans reveal no evidence of disease. Pray that Jerry and I will be given a sense of peace while Morgan and my parents are in New York.
July should be a very exciting month for us once we get through scan time. On July 25 Morgan will turn 6. She is growing up. And, we should welcome the newest member of our family sometime in July. All is going well in that department and the pregnancy continues to be very uneventful. I will be 37 weeks on Sunday and this is considered full-term. In my book, this means that Lyndie can make her debut anytime after Sunday. However, I think Lyndie has other ideas. I went to the doctor yesterday and there are no signs that she is coming anytime soon.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION
I STILL HAVE ABOUT 15 COOKBOOKS LEFT. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Wednesday, June 1, 2005
Hello Friends,
NEW PICTURES HAVE BEEN ADDED TO PHOTO ALBUM!
Morgan has officially been off treatment for one month, two weeks, and two days. However, that official count seems a bit “unofficial” because she has gone this long without treatment since starting antibodies in April 2003. Morgan normally went eight weeks between treatment cycles. If we were still going to New York for 3F8, we would be due to leave on June 5. So, I guess it will seem more like Morgan is officially off treatment on June 5 when we are not heading to the airport to catch a plane to New York.
In my last update, I mentioned Morgan’s pulmonary function studies. I thought that she did not do very well on the test because she was very unhappy about the whole thing. Everything must have been fine, because we received no phone calls telling us otherwise. Another topic of concern of us was that Morgan’s urine markers in February came back slightly elevated. Her urine was retested again at the end of May. These numbers also came back slightly elevated. Morgan’s doctors here at Brenner Children’s Hospital decided that the best course of action to take was to just stop testing her. I must admit that I was slightly disturbed by the urine elevation, but since her scans in February were fine and her bone marrows drawn in April were fine I did not really get into an uproar about it. There is a long list of foods that can elevate these numbers. Tea and orange juice are just two examples. Morgan enjoys both of these things and this could be a factor in the urine markers being elevated. MSKCC will test her urine again when she has quarterly scans. They do a 24-hour urine rather than a spot check and it is easier to help her avoid certain foods when we are in NY (she hates tea on the other side of the Mason Dixon because it is not of the sweet and strong variety). I assume we will worry about the urine markers if we decided there is a reason to and more importantly, if Dr. Kushner tells us we need to worry.
Morgan’s final HAMA test came back negative. This means that she was the only child on her protocol that went through the entire protocol and did not get HAMA. We have no idea what this means for her overall prognosis. However, we are blessed by God to be at the point we are at today. Many children develop HAMA and lose it. The doctors at MSKCC would like to continue to monitor her HAMA levels for research purposes.
We have decided that we are doing Morgan’s long-term follow-up care at MSKCC. This means that for a year we will be returning to NY every three months so that Morgan can have MIBG scans, CT scans, bone marrow biopsies and aspirates, urine tests, blood work, and other appointments that are part of the follow-up protocol. After a year, we will go every six months. Morgan is due to return for scans in July. Since July is not an optimal traveling time for me, my parents are planning on taking her. It will be very strange for me to put her on a plane and not accompany her but she will be receiving the best of care and will probably enjoy the break away from me. No definite dates have been set for that yet, but as soon as they are we will probably establish another prayer vigil for Morgan. Prayer has carried us since this ordeal began and we certainly do not want it to stop now. Morgan told me today that she is ready to go back to NY but this time she does not want to have treatment; she only wants to do fun stuff.
Morgan completed kindergarten on May 27 and she is now in the midst of enjoying summer break. The year ended much more smoothly than it started. She made so much progress and her father and I are very proud of her. We had her IEP meeting on May 2 to determine her needs for next school year. Morgan will remain in the Exceptional Children’s Program because she is considered Other Health Impaired. She will receive fewer services next year than this year. Of course, our goal for her is to eventually be phased out of the program. Therefore, this is a step in the right direction. Next year, she will have speech once a week rather than twice. She will still receive occupational therapy at school once a week and once a week at the hospital. This year, Morgan met with the resource teacher on a regular basis since she was missing some material while we were in NY. Next year, this will not be necessary. Morgan will continue to wear her auditory trainer in the classroom. We feel it helps her as much with paying attention as it does with hearing issues. We will be meeting with the principal around the middle of June to discuss what Morgan’s specific needs are and what type of teacher will be best suited for those needs.
The last week of school Morgan had field day. Jerry and I both went to watch her participate. The progress she has made was so evident to me. The biggest improvements I saw were in her social and physical development. I cannot express how proud we are of her.
On May 20, Morgan participated in the Forsyth County Relay for Life. Morgan and Holden’s former teacher, Tonjua Hall, always coordinates a team in honor of Morgan. Morgan opted to ride on her daddy’s shoulders during the Survivors Lap. Once again, it brought tears to my eyes. Morgan has come so far and it has all been by the grace of God. We are so thankful.
Morgan and Holden continue to do well in karate. They had their most recent belt test on May 21. Morgan did quite well. Holden stood around the whole time looking rather confused. I think it was because the format of the test was different from the past. Normally, they just test in class. This time all the students from this part of the county tested at a large, outdoor event. Fortunately, both kids did well enough to be promoted to the next level. They now have the orange striped Little Dragons belt.
May 24 was a day to remember. Morgan had her final immunization. The stem cell transplant wiped out her body’s memory of the immunizations that she had as an infant. For almost a year, we have been on a mission to get those redone. It was much easier to have her immunized as an infant than as a talking girl who can voice her displeasure with the events. Each time we went, Morgan cried, I cried and the nurse cried. Praise the Lord – Morgan does not have to have another childhood immunization until she is 10. Well, I guess she will continue to need flu shots each fall but I am not bringing up that topic until I have to.
Holden is doing quite well. He has four more soccer games until his season is over. He seems to still enjoy it, although he does lose interest rather quickly. Today was a bittersweet day for him. It was his last day at Medical Center Childcare. He is going to hang out with Morgan and me this summer and then in the fall he will start preschool at Reynolda Presbyterian. We have loved our experiences with MCCC, but since I am not working next year, it makes no sense for Holden to continue to be enrolled in full time daycare.
Lyndon and I are doing fine also. My gestational diabetes test came back normal, which was a surprise to me. I had an appointment last week and everything is fine. I am now on a schedule to go every two weeks. It is getting exciting to think that in eight weeks she will be here. On May 21, Grandma Penny hosted a shower for us. We got many adorable outfits. This really helped me to get anxious to meet our baby and start dressing her in some of those great clothes. Morgan and Holden are also excited about having a little sister.
Today was my last day of work. I am thankful that I will be able to relax a little more now, although I may find that staying home with two (soon to be three) kids is not very relaxing at all.
There are two important events on the horizon that I want to inform everyone about. We are helping out with one of Alex’s Lemonade Stands on June 11. It will be at McCollum’s Texaco and Hardware in Stokesdale, NC. Alexandra "Alex" Scott was the 8 year old founder of Alex's Lemonade Stand For Pediatric Cancer Research. Two days before her first birthday she was diagnosed with neuroblastoma. At the age of four, Alex decided to do something to make that cure more likely. She opened her first lemonade stand in July of 2000 with the idea of donating the proceeds to "her hospital." Each year, Alex held an annual lemonade stand in her front yard. As word has spread, donations have poured in from around the world, and she raised over $1,600,000 for pediatric cancer. Alex's stands are now done in her memory because she became an angel last year. Click HERE to learn more about Alex’s Lemonade Stands.
Directions to McCollums Texaco and Hardware: Directions from Business 40: Take the Highway 158 Reidsville/Walkertown exit. Take 158 all the way to Stokesdale. At the light in Stokesdate (there will be a BiRite Grocery on the corner) turn right to stay on 158. At the next stoplight, keep straight. Go approximately 12 1/2 miles and you
will see a Texaco on the left. That is where we will be.
The second event is a fundraiser hosted by my friend and neighbor, Robin Boger and Page Crater, a Pampered Chef consultant. It will be on Sunday, June 26 from 12:30-3:00. At Christ Moravian Church, 919 West Academy Street, Winston-Salem, NC. It is located close to Old Salem, which is centrally located in Forsyth County. If you would like to place an order without attending the party, email me and I will send you the information you need. The proceeds from this event will be sent directly to Memorial Sloan Kettering Cancer Center in honor of Morgan and to assist with her medical bills.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Saturday, April 30, 2005
Hello Friends,
We have had a terrific week and now we are enjoying a restful weekend. God is so good. Thankfully, there is really not a lot to report about our lives. Our lives are very normal now and I keep thinking that no one is really interested in reading about trips to dance class, karate, and soccer games. I think I am going to start doing monthly updates. This is just another step in our lives heading back to a normal direction.
Morgan and Holden are both gearing up for their next belt test in karate. It is in a few weeks. They both seem to like karate and I am glad. I really like the fact that this is one activity that they can do together. Morgan has no interest in sports and dance class would be very boring for Holden. Karate is something they both like. Although when Morgan turns six in July she will move out of the Little Dragons program. We may find that neither child enjoys it as much when the other one is not there. Morgan got angry at karate on Monday because they were supposed to be going under an outstretched rope and then come up punching. Morgan wanted to limbo under the rope instead. The teacher reminded her very kindly that it was not limbo time and she pouted for the rest of the session.
I was supposed to have a meeting a church on Wednesday and Jerry and Holden had soccer practice. I made arrangements for Morgan to go watch her classmate and neighbor, Brinley, play t-ball. When my meeting was cancelled, Morgan would not hear of not going to Brinley’s game. It is such a victory to us when Morgan does anything new for the first time. This was the first time she attended this type of event without Mom, Dad, or her grandparents there. I am sure that most five year olds do stuff like this all the time, but Morgan missed out on so much during her illness and it is taking her awhile to catch up. Morgan really enjoyed going to the game and then going to play at Brinley’s house after the game. However, she is still not interested in sports. When I asked her if she enjoyed the game she enthusiastically said yes. When I asked her if she would like to play t-ball she enthusiastically said no.
On Thursday, Morgan had an appointment at Brenner Children’s Hospital. They did a routine blood count (which must have been fine because no one notified me differently) and drew the HAMA blood to be sent to NY. Then Morgan had to go downstairs for pulmonary function studies. She has not had these in two years even though she is supposed to have them once a year. Morgan’s lung capacities did not seem all that great to me, but I am no doctor. She really did not like the tests because they involved putting tubes and such in her mouth and then having her blow. I am not sure if her capacities were off because there is a health issue or she was just not capable of cooperating on the tests. I guess someone will call me next week if there is a problem. Morgan’s doctors at Brenner also wanted to do another set of urine markers on her. When she had her scans done back in February, the number came back very slightly elevated. These tests can be affected by certain foods. The doctors just wanted to make sure they have not gone up anymore. I will know the results of this on Monday or Tuesday. We are really not expecting any surprises since all of her scans and tests in February were fine and she has had another clear bone marrow test since then.
I had an OB appointment on Friday. Lyndon continues to grow. I gained another five pounds. She is measuring at 28-29 weeks. I will be 28 weeks tomorrow. Her heart rate was good too. I had a glucose tolerance test, which tests for gestational diabetes. With my previous two pregnancies, I have failed the one-hour version of this test. I have had to take a three-hour test two times previously, but have never been diagnosed with gestational diabetes. Hopefully, I will pass the one-hour test this go round so that I don’t have to take the three-hour test.
Holden had his first soccer game today. He had a good time. I think he really enjoyed it because it rained a lot yesterday and the field was muddy. He is all boy and loves getting dirty. Morgan, however, tripped and fell in the mud and was not quite as happy about it. But, she got over it fairly quickly when Grandma and Pawpaw showed up at the game. When the game ended, she announced that she was leaving with them. They left and headed off to see their other grandson, Smith, play t-ball. After the game, Morgan must not have wanted to come home because she is not back yet. We are heading out the door in a few minutes to go spend the evening with our friends, the McLeods. I am sure when we stop by to get Morgan and tell her that we are going to see Madison she will eagerly get in the car. Going to play with Madison is much more fun than simply coming back home.
Hopefully, there will be nothing to report for the next month. Thanks for the continued support that you have shown our family.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray for wisdom for Jerry and myself in determining what we should do in terms of Morgan’s follow-up care.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Saturday, April 23, 2005
Hello Friends,
Morgan and I have certainly enjoyed being back home in NC this past week. We have been so busy, but it has been great.
After much discussion, Jerry and I have decided that we are going to do Morgan’s follow-up care at MSKCC. This means that we will continue going to NY every three months for CT scans, MIBG scans, bone marrow biopsies/aspirates, urine tests, and HAMA tests. It was somewhat stressful trying to make this decision. On one hand, I really wanted to not have the worry of quarterly tests hanging over my head. I think I was hoping that deep down someone would give me the reassurance that Morgan has been cured forever and there is no need to even think about the possibility of this disease ever coming back. Unfortunately, I know the reality of this disease. It is a beast. We have decided that it is best to try to stay on top of it. We also decided that MSKCC is where some of the world’s leading experts on neuroblastoma practice. It is in Morgan’s best interest to remain on their radar screen. We love our doctors here at Baptist Hospital. But they have a much different opinion on treating relapsed neuroblastoma than the team in NY. Basically, our doctors here will not treat it. Of course, we are praying that this is never an issue for Morgan, but we disagree with this opinion. Plus, Morgan’s treatment in NY has been part of a clinical trial. She was the only child to make it through her protocol without developing HAMA or being removed from the study due to relapse. Therefore, for research reasons the team in NY needs to follow her progress. I certainly do not like the idea of Morgan being a guinea pig. But, the data they get from her may someday help other children be cured of this horrible disease. I feel it is our calling and duty to finish what we started when we began treatment in NY back in April 2003. At that time we desperately needed 3F8 to clear her bone marrow. It did and of course we thank God first and Dr. Kushner and the other doctors at MSKCC second. MSKCC also has an endocrinologist that Morgan will probably begin working with to help us deal with the long terms side effects of the disease and the treatment of the disease. This was not an easy decision to make. We prayed about it. We asked others to pray about it. We discussed it with my parents. And we discussed it with other parents who have children who have reached the same point of treatment as Morgan.
Dr. Kushner wants Morgan to return to NY for scans in July. Of course, this is not the best timing for us since we are expecting Lyndon’s arrival on July 24. He said it would be fine to move this trip back to after Lyndon has been born. But, my parents have agreed to take Morgan back for scans in July so that we don’t have to wait. (Where would we be without them?)
Morgan’s bone marrow biopsies came back showing no evidence of neuroblastoma. Thank you Jesus. The aspirates had not been read at the time he emailed me, but there is no reason to believe they would show anything since the biopsies were fine.
Morgan has been happy to be back at school this last week. I can’t believe that she only has five more weeks until summer vacation. She told me the other day that she loves school. She has come so far since the beginning of the school year. The entire kindergarten is gearing up for the play, Oceans of Fun. Morgan will be making her stage debut as a rainbow fish. Her teacher told me that she is a natural actress. I have always known she was a drama queen so I am not really surprised by this news.
Holden had his first outdoor soccer practice on Wednesday. Jerry is his coach. Morgan and I went along to watch. We were sitting on the sidelines and Morgan was complaining about everything. I suggested that she go help her daddy coach thinking she would refuse because I she disliked soccer so much. Well, I was wrong. She went running onto the field and spent the rest of the practice running around like soccer was her favorite thing in the world. She stood in the goal and retrieved the balls and did lots of chores to help the team. Some of her help really wasn’t so helpful, but her daddy did not have the heart to tell her because she seemed to be having such a good time. . She is a unique little bird. She still has no desire to play soccer but she is quick to tell me that she is her daddy’s soccer helper. I guess she likes the idea of being in charge.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan’s bone marrow tests from April 14 will come back showing no evidence of disease.
4) Pray for wisdom for Jerry and myself in determining what we should do in terms of Morgan’s follow-up care.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Saturday, April 16, 2005
Hello Friends,
Greetings from Lewisville, North Carolina. We arrived in Greensboro last night around 7:00. It was a wonderful reunion. Morgan and Holden were so excited to have the whole family back together again that they did not go to sleep last night until after 11:00. Of course, I was the last one up this morning.
Morgan’s treatment yesterday was not that bad. I think this was because she knew that North Carolina was waiting for her. She had pain, hives, and two big knots that popped up on her head. She received two half-doses of dilaudid. It was fairly obvious that she has not developed HAMA. I got kind of teary eyed as we were making our final departure from clinic yesterday. Those people have been part of our lives for the last two years. It was kind of hard saying goodbye. I guess it was like high school graduation. Part of you is excited that you are moving on to a new aspect of life, but part of you is going to miss the comfort of what you have been used to. I think Morgan felt some of those same feelings because she kept saying that she was not going to say goodbye to anyone or anything.
Dr. Kushner came in yesterday to talk with us about what is expected in terms of follow-up care for Morgan. We are fairly certain that we are going to do all of Morgan’s follow-up care here at Wake Forest University Baptist Medical Center. I was kind of surprised when Dr. Kushner told me that we need to continue doing MIBG scans and bone marrow biopsies/aspirates every three months. He also wants urine tests performed and HAMA blood sent to him every three months. Jerry and I have mixed feelings about this. On one hand, I know that we need to stay on top of this horrible disease. But on the other, I wonder if these invasive tests are a bit much for a child who has been in remission for 26 months. The urine tests and blood work are no problem. But bone marrows are painful and require sedation. MIBG scans require that Morgan be injected with a radioactive isotope. Jerry and I are still trying to decide exactly what we want to do. Please pray that we will make the right decision.
Today we get back to our normal routines. The kids have their last soccer game this morning. Morgan will not be playing since she still has a fairly new incision from the port removal. This does not break her heart because she has finally admitted to me that she does not like soccer and does not want to play anymore. Holden loves the game and will start practicing for the outdoor soccer team on Wednesday. Morgan will return to dance this week and both kids will go to karate. I will go back to work. I have to work 20 more days to fulfill my contract. Hopefully, our lives will maintain a normal pattern doing normal things for many years to come.
Prayer Requests (There are some new ones).
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan’s bone marrow tests from April 14 will come back showing no evidence of disease.
4) Pray for wisdom for Jerry and myself in determining what we should do in terms of Morgan’s follow-up care.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Thursday, April 14, 2005
Hello Friends,
This is just a quick update to let you know that our long day at clinic is over. We arrived this morning at 7:00 to go through all of the pre-surgery formalities. The procedures began around 8:45. It took about 30 minutes to remove the port and do the bone marrow biopsies and aspirates. Morgan stayed in the recovery area for another 30 minutes and then it was time to head to the bed area for treatment.
Treatment today was very similar to the last few days. I was hoping that it would be less painful since she had already been sedated earlier for her procedures. She still required three half doses of dilaudid. Morgan fell asleep close to the end of treatment. She slept for about 40 minutes and then woke up in a very grumpy mood. First, she woke up screaming for more medicine. She did not want to hear that treatment was over and more medicine was not an option for her. Finally, she asked me to leave the room and I was willing to do anything to get her calmed down. She would be fine for awhile and then I would hear her screaming again. After she was unhooked, she decided that she did not like the IV that was coming out of her arm. She has not had an IV since she was diagnosed in July, 2002 because everything has been done through the port. I could hear a little of what was going on so I went back into the room to try to rationalize with her. I finally got Morgan to understand that if the IV did not stay in, she would have to get a shot to put it back in tomorrow. She certainly understood these words. Then, she did not like the way the IV was taped to her arm. Once we re-taped, she declared that she and Grandma could leave clinic. I, however, was not allowed to leave clinic. I was instructed to wait at clinic until she called me on my cell phone to tell me that it is okay for me to come back to the RM House. In fact, she thinks that I am still at clinic waiting for her to call.
Today is a monumental day for the Barnes Family. We were sitting in clinic and I was going over some paperwork that I carry in my New York folder. I realized that Morgan started antibodies on April 14, 2003. Today is the two year anniversary of starting this treatment. It is only fitting that she had her port removed today. And tomorrow will be another monumental day. Morgan will officially be off treatment following tomorrow's dose of 3F8. Please join us in praying that Morgan will never again endure any more cancer treatments.
I am hoping to get the phone call soon that will grant me permission to return to the room. I am ready to start packing so that I can start preparing for our trip home tomorrow. My next update should be typed from beautiful Lewisville, North Carolina.
Just as I was finishing the previous paragraph I got the call.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
4) Ask the Lord to grant us traveling mercies during this final trip to New York.
5) Ask for the Lord’s peace to cover Holden while we are gone.
6) Pray that Morgan's bone marrow tests (drawn on April 14 show no evidence of disease).
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Wednesday, April 13, 2005
Hello Friends,
Morgan had a pretty good day yesterday. As I was finshing yesterday's update, she came down to the playroom. She stayed and played for close to two hours. She spent most of that time in the computer lab playing on the Nick Jr. website. I think she likes computers as much as her father.
Today was a much better day at clinic. She was in a lot of pain. However, she fell asleep just as treatment was over. She took a nice long nap and was able to sleep off the effects of the drugs. When she woke up she asked to watch TV a little while longer and then she would be ready to go. There are only a few kids having 3F8 this week so it was easy to accomodate her request. There was no one waiting for her bed. She has been in a pleasant mood (for the most part) ever since she woke up from her nap. She is in the computer lab with me right now playing on Nick Jr. again. I am thinking that this will not be a quick trip to the lab because it is hard to get her off of the computer.
I am still pretty unclear about tomorrow's schedule. Someone is supposed to call me as soon as everything is finalized. We found out today that her procedure will take about 30 minutes. After the port is removed, an IV will be placed in her arm and will be left there until treatment is over on Friday. I am not sure how Morgan will react to that. She will be unconscious when the IV is placed so that will not be a big deal at all. However, she has never had to have a line coming out of her arm before and she may not like that too much. She had her port placed only two days after diagnosis and it has been a faithful friend to her. I asked them if I could see it after it comes out. I never really got a clear answer on that one. Morgan will also have bone marrow drawn out of four spots on her hips (front and back) tomorrow. I am so hoping that this the last time she has to do this. She never complains, but there has to be some pain after this invasive procedure. The final thing we will do tomorrow is have another round of 3F8. I am hoping that the surgery and bone marrows wipe her out to the point that she is able to sleep through most of antibodies. Otherwise, she could be a very unhappy camper by the time treatment rolls around.
We have made it to the point where we can say "We are going home on the day after tomorrow". I guess that means Morgan's long road of cancer treatment will be ending on the day after tomorrow. When Morgan was first diagnosed, I remember telling someone that her total treatment protocol would take about 9 months. That was before we decided to pursue antibody treatments. It has been a long, hard road but we are honored and blessed by God to be in the place we are today. Thanks so much for the faithful prayers you have been praying on our behalf since July 31, 2002. Please continue to pray that after April 15 Morgan will never again have to endure any type of cancer treatment.
I am not sure if there will be an update tomorrow or not. We may be tied up at the hospital for quite awhile tomorrow. I am positive that I will not be able to do an update on Friday. Our flight out of here is at 2:00. (We are now on the 48 hour countdown!) Our car is coming at 11:30 to take us to the airport. Treatment may not end until 11:00 or so. I will do an update on Saturday.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
4) Ask the Lord to grant us traveling mercies during this final trip to New York.
5) Ask for the Lord’s peace to cover Holden while we are gone.
6) Pray for the Lod to be with Morgan during the surgery to remove her port on Thursday 4/14. Also ask that the bone marrows that are drawn at this time will show no evidence of disease.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Tuesday, April 12, 2005
Hello Friends,
Yesterday, Morgan ended up sleeping the entire day away. When we got back to the room, she was really itchy so I gave her some benedryl. Very rarely does benedryl knock her out. I guess it was a combination of treatment, recovering from the weekend, and the benedryl. She slept until 7:30 last night. When she woke up she was in a great mood and seemed to have no recollection of how difficult things had been after treatment. She played some and then she wanted to watch the Miss USA pagent. She cheered Miss North Carolina on to victory. We turned out the lights around 11:00. I am not sure if Morgan was tired (I don't see how that would have been possible) but she drifted off to sleep anyway. Morgan woke up this morning in a charming mood.
Today's treatment was not much different from yesterday's. We asked that she have three half doses of pain medicine, but another mistake was made and she ended up getting two half doses and one full dose. She slept for awhile as treatment was ending, but when she woke up she was a not in a good mood. She screamed and yelled for awhile. When we got her loaded up into the stroller she declared that she did not want to wear shoes or socks. Instead, she wanted to wrap her feet up in her blue blankie. I explained to her that the blue blankie would probably get dirty this way, but she would not change her mind. Of course, when we got back to the RM House the blanket was coated in one corner with black NY street dirt. She was not happy when I took the blankie off to the washing machine (nor was I because this blanket is on its last leg and probably will not withstand many more trips through the washing machine). She eventually calmed down and patiently waited for the blanket to come back to the room. I don't think today was as difficult as yesterday, but it still was not easy.
Morgan has three more treatments to go. Please pray that these will be the last three cancer treatments that she ever has. We found out today that her surgery will take place around 10:00 am on Thursday. Please keep her in your thoughts and prayers during that time.
Our Little Princess just made a debut in the playroom. It is obvious that she is feeling better today than yesterday -- Praise the Lord. Hopefully and prayerfully tomorrow will be even better.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
4) Ask the Lord to grant us traveling mercies during this final trip to New York.
5) Ask for the Lord’s peace to cover Holden while we are gone.
6) Pray for the Lod to be with Morgan during the surgery to remove her port on Thursday 4/14. Also ask that the bone marrows that are drawn at this time will show no evidence of disease.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Monday, April 11, 2005
Hello Friends,
We had a terrific weekend. Morgan was in great spirits the entire weekend and the weather here in NY was beautiful. It has actually cooled down 20 degrees from yesterday to today. We are certain that the weather the last two days was a gift from God and He really wanted us to enjoy our last weekend here in the city.
On Saturday, we let Morgan sleep in and then we took off to the Three Star for breakfast. After that, we hopped in a cab and headed for the Empire State Building. The line to get up to the observation deck was rather long, but Morgan did not complain a single time. She loved the view from the top. The closer she could get to the edge the better. I must admit that I was a bit of a weenie because I kept having this vision of her going off the side of the building, although that is impossible. But I am a mother and it is my job to worry. We ran in Macy's so I could make a quick purchase for an upcoming birthday. We made a few more stops and then leisurely made our way back to the RM House. It was amazing how quickly the day flew by.
Sunday was a pretty lazy day. Renae got up really early to catch a flight home, but the rest of us did not roll ut of bed until much later. Morgan slept in really late and by the time she was up and dressed it was lunch time. We skipped breakfast altogether. Some students from Julliard came to the RM House and did a production of The Little Prince. Morgan, who is very artistic, was very into this. After the play, we headed to her favorite place in NY -- St. Catherine's Park. Then we strolled back to the RM House by way of the river walk, with the East River to our right and the FDR Parkway to our left.
The clock went off this morning and it was time to get back into the real reason we come to NY. Treatment was not so great today. Morgan had more pain today than she was having towards the end of the week last week. To be honest, I do not think HAMA is in her future. I guess some kids just never develop it and she is one of them. She needed three half doses of dilaudid. Her attitude was horrible today. She threw Grandma out of the room, then she threw me out of the room. She demanded that I not leave clinic when she did. I made sure Morgan and Mom got a headstart but I still got back to the RM House too early. She told me that I needed to go back to the RM House and start my walk over again. I walked out of the room to do laundry and she totally lost it. I could hear her screaming that she wanted her mommy (even though she had just thrown me out of the room). After about an hour, she calmed down.
Our trip to clinic today was a pretty miserable experience. I just kept telling myself that it is something that we will only have to endure four more times. I am sure we will make it through. Please pray that these will be the last four cancer treatments that Morgan ever has to endure.
Prayer Requests (Number 6 is a new one):
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
4) Ask the Lord to grant us traveling mercies during this final trip to New York.
5) Ask for the Lord’s peace to cover Holden while we are gone.
6) Pray for the Lod to be with Morgan during the surgery to remove her port on Thursday 4/14. Also ask that the bone marrows that are drawn at this time will show no evidence of disease.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Friday, April 8, 2005
Hello Friends,
It is finally Friday. I am looking foward to having two days with no clinic and no 3F8 treatments.
Yesterday was a really hard day for Morgan. It was like she could just never get over treatment. She felt bad for the entire afternoon. Mostly, she just laid on her bed with her eyes fixed on the TV occasionally crying out in pain. To make matters worse, her skin was very itchy. I gave her Benedryl, Tylenol, and coated her with Cetaphil lotion and nothing helped. The Benedryl knocked her out for all of 30 minutes and then she woke up feeling worse than she did when she went to sleep. It was rather pitiful and left me scratching my head as to what was going on with her. With this being cycle number 13 for Morgan, I was really not expecting any surprises. She never developed a fever or anything so there was not really a cause to take her into urgent care.
Mom, Renae, and I were all very surprised when she sat up in bed around 8:45 and had suddenly sprang to life. She felt great. It was so weird. She went from being a zombie to a live-wire in about 3 seconds. She even announced that she was ready to do some school work. Morgan and I worked on school work for about 45 minutes. Then she painted for awhile. Then she decided she was ready for bed. It was a very strange afternoon and evening but we were all very thankful that she snapped out of her spell. Having days like yesterday makes me very thankful that she is coming to the end of the road in terms of treatment (it also scares the daylights out of me, but that is a different story).
Today has been much better than yesterday. Morgan woke up in a great mood. Treatment was not that bad. She asked for pain medicine several times but we only gave her one dose. A mistake was made and she was given a full dose rather than a half dose, but that ended up not being so bad. She was sleeping after treatment was over and she sat up and told me that she wanted some more pain medicine. I said that she could not have anymore and she got very ticked off at me. I called in reinforcement (Grandma) and I left the room when Morgan told me that she did not want to see me anymore. Mom got Morgan nice and calm. After being de-accessed, Morgan climbed in the stroller and told Renae and myself that we would have to come along after them. We were not to walk back with them. No big deal, at least she was not screaming at the top of her lungs.
Morgan relaxed for a little while and then I took her to St. Catherine's Park. She did not want to stay long so we stopped by to visit the icecream truck and made our way back to the RM House. She has been watching videos and taking it easy ever since. When I left the room to come down here she was dancing with the Wiggles. It seems to be a much better day than yesterday.
This cycle of treatment is halfway over. This time next week we will be somewhere between NY and NC because we are taking an earlier flight out. It is hard to believe that we are coming to the end of this journey that we started in July 2002 and we still have our beautiful little girl. So many families that we have come to know have met the end of the journey in a much different way. Please pray that Morgan is able to beat this hideous disease and that her body will never again be invaded by cancer or abused by the drugs that are used to treat cancer.
We are planning on having a good weekend. Morgan wants to go see the Empire State Building since her class read a book about it right before we came up here. I will do another update on Monday.
Prayer Requests (Number 6 is a new one):
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
4) Ask the Lord to grant us traveling mercies during this final trip to New York.
5) Ask for the Lord’s peace to cover Holden while we are gone.
6) Pray for the Lod to be with Morgan during the surgery to remove her port on Thursday 4/14. Also ask that the bone marrows that are drawn at this time will show no evidence of disease.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Thursday, April 7, 2005
Hello Friends,
Morgan ended up having a pretty good day yesterday following treatment. She watched a few videos and then Grandma and Renae took her to St. Catherine's Park. The weather here yesterday was glorius. Morgan came back from the park and was in a fine mood. She spent the day relaxing in the room and by the evening was dancing around and having a ball. Our girl had trouble sleeping last night. She was very restless the entire night. I am not sure if she was having a bad dream or what.
Treatment today was okay. She seemed to have the same amount of pain as yesterday, or it may have even been a little bit less. She asked for three half doses of dilaudid. I am almost positive that she did not need the first one or the last one. Giving her that last one turned out to be a huge mistake. It sent her completely over the edge. She went from being very sweet to be very angry in the blink of an eye. Fortunately, it did not take her long to get herself calmed down at clinic. It was only about at 10 minute tantrum. Things were running pretty slow at clinic today so we lingered until Morgan actually asked to me unhooked. However, things started going downhill again when it took them a long time to come in and unhook her lines. To make matters worse, when we were finally able to leave we were stopped on the way out because they forgot to draw Morgan's final labs. Well, that sent her over the edge and she has not recovered yet. She did not want to return to her room and she let everyone know it. She was calm enough on the way back to the room. After watching one video, she declared she was ready to go to the park. Mom and Renae took her to the park and from what I hear she was fine while there. On the way back she decided that she wanted some Gatorade. Renae made the mistake of going into the wrong store to get the Gatorade. It took my mom awhile to get her calmed down. I am not sure who is doing what as I type this update. Mom declared she needed to take a walk so she may be out on the streets. Morgan is in the room and hopefully relaxing so that Renae can take it easy too. Today has not been a very fun day. I am sure things would have been better if Morgan would have had a restful sleep last night. Plus, I have decided that she will be cut off tomorrow after her second half dose of pain medicine tomorrow. No one wants another afternoon like we have had today.
Holden had a dentist appointment today. I am having a guilty mom moment because I have never taken that child to the dentist. It seems like each time he has had an appointment, I have been tied up with Morgan's medical care. Jerry said he did great and is still a member of the "No Cavity Club". I am also missing his field trip to the zoo tomorrow. I guess it helps some to know that this is Morgan's last treatment and Lord willing, I will be able to take him to his next dental appointment in October.
This week is almost over. Morgan has six more treatments to go. Please pray that these will be the last six cancer treatments that she ever has to have. Also, pray for her on Thursday (4/14). She is having surgery to have her port removed and having bone marrow aspirations done. Please pray that both procedures go smoothly and all tests come back showing no evidence of disease.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
4) Ask the Lord to grant us traveling mercies during this final trip to New York.
5) Ask for the Lord’s peace to cover Holden while we are gone.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Wednesday, April 6, 2005
Hello Friends,
Morgan ended up having a good afternoon yesterday. She and Grandma went to St. Catherine's Park while I stayed behind to get the laundry done. Morgan played for about 30 minutes, paid a visit to the icecream truck, and then came back to the room.
Last night, Bloomingdale's sponsored an event for the mothers at the RM House. It was make-over night. Mom and I participated and had lots of fun. The fun we had paled in comparison to the amount of fun Morgan had. She went from station to station getting herself worked on. It was right up my little drama queen's alley. They showered her with gifts and made her feel like a little princess. It was obvious that she was feeling good and that made me happy.
Today's treatment was much better than the last two days. She still needed three half doses of dilaudid, but I am not really sure if she needed the first one. As you know, she is a creature of habit. Her mood was great throughout treatment and for most of the time after treatment. 3F8 causes Morgan to be itchy and unfortunately, she scratched her nose so much today that she put a bleeding scratch on the end of it. When we tried to stop the bleeding, this sent her into a spell. She kept rubbing the blood off with the back of her hand and eventually she looked like she had been in a fight with a feline. We finally managed to get the bleeding stopped and her faced cleaned up. Her mood has been okay ever since. She is relaxing in the room right now. She proclaimed that her clothes made her itch when she got back to the room, so she put her pajamas on.
Our friend, Renae, flew up today. She will help to keep us entertained and perhaps the hours will fly by a little quicker with her here. It has become sort of a tradition for her to visit while we are in NY. Of course, she had to make it up here for Morgan's final adventure with 3F8.
I found out today that Morgan is going to have surgery on April 14 to have her port removed. She will also undergo the bone marrow testing process. Please pray that all goes smoothly with this procedure and her bone marrow tests will reveal no evidence of disease.
We have made it over the hump of the first week. Seven more treatments and we are done. Please pray that the Lord will protect Morgan from this horrible disease and her body will never again have to endure any cancer treatments of any type.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
4) Ask the Lord to grant us traveling mercies during this final trip to New York.
5) Ask for the Lord’s peace to cover Holden while we are gone.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Tuesday, April 5, 2005
Hello Friends,
Morgan ended up not being able to go to St. Catherine's park yesterday. She was too exhausted. After watching videos until dark, she looked out the window and started crying and telling us that she forgot to go to the park. She got over it quickly.
I cannot exactly say that she had a good afternoon yesterday. She was very moody. For most of the day, she was very quiet. However, every now and then something would set her off and she would let us have it. At one point she got so bent out of shape that she got sick to her stomach. This was mostly from treatment and she probably would have done it without the temper tantrum. But, I am sure the tantrum did not help her stomach feel any better. She complained for much of the afternoon with a headache. I also had to give her Tylenol right as she was going to sleep because she complained that her head and feet were hurting. Thankfully, she slept well and woke up in a great mood this morning.
Treatment today was perhaps just a tad bit better than yesterday. I think she had less pain because today we gave her three half doses of dilaudid rather than four half doses. Her attitude was worse than yesterday. Yesterday, we did not have to go through that ritual of Morgan complaining when it came time to leave clinic. She did it today, but it was not nearly as bad as it has been in the past. She got herself settled down after a few minutes out on the street. I think that she is trying much harder to control herself these days, but all the drugs make that very difficult. She is now in the room relaxing and watching videos. We are going to try once again to make it to the park, but we shall see what the day brings.
I mentioned to Latisha, Morgan's nurse, that I was not eager to do bone marrows next Friday for a variety of reasons. One, she just had bone marrows drawn in February. Two, I don't want Morgan to be sedated any more than necessary. She will be having her port taken out when we get home. Why can't the bone marrows be drawn when she has that surgery? Three, we are booked on an early flight out of here and there is no way to get all of that done and be on our way to the airport in time. This is the first time that I have ever scheduled us on an early flight. We have never run into delays before, so I did not see the point of waiting around on the final day of treatment. Of course, if the team here thought that it was absolutely necessary to draw those bone marrows on that particular day I would gladly change my flight plans. Well, right now the team is trying to work out a schedule for us to have everything done on Thursday, April 14. This would mean that Morgan would have her port removed up here and have the bone marrow samples drawn. Hopefully, this will work out. It will be better to do it this way in the long run because it is one less day of school that Morgan will have to miss. I was fully assuming that she would have to miss school to have her port surgery done. Please pray for everything to fall into place for this plan.
We have managed to get two days of this treatment cycle behind us and have eight more to go. Please pray that these will be the last eight days of cancer treatment that Morgan ever has to endure.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
4) Ask the Lord to grant us traveling mercies during this final trip to New York.
5) Ask for the Lord’s peace to cover Holden while we are gone.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Monday, April 4, 2005
Hello Friends,
Greetings from New York City! Our arrival yesterday was much more uneventful than our arrival back in February. We had smooth flights and arrived in the city at a decent hour. We were checked into the RM House by 6:30. We unpacked, had dinner, relaxed and then headed off to sleep.
Today's treatment was pretty hard for Morgan. I don't guess it was any different from any other first Mondays, but I guess I had the expectation that today would be easy. I guess it was wishful thinking that HAMA is right around the corner. Morgan was in quite a bit of pain. She needed two full doses of pain medicine. We had some problems at the end with her heart rate staying a bit high at the end. She also had some itching problems. Eventually, these problems resolved and we were ready to head back to our room at the RM House. Morgan is still a bit itchy. In fact, we got back to the room and she took off her clothes to put on a cotton gown. She did inform me that when she is ready to go to St. Catherine's Park she will put her clothes back on. At least the weather here is now okay. It is really warm, but it is sunny and cool. Going to the park should not be a problem, as long as we are in our jackets.
Dr. Kushner informed us today that he wants to biopsy Morgan's bone marrow on her final day of treatment. I assume it is part of the study. Morgan's just went through this back in the middle of February and I am not so anxious to do it again. We shall see how this transpires. I can understand the fact that they want a post-treatment sample, however, does it have to be done so closely to her last one?
One day down and nine to go and Morgan will be finished with treatment. Please pray that these last nine treatments that she has in the next two weeks will be the final ones that she has to endure EVER. Pray that cancer will never again return to her body.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
4) Ask the Lord to grant us traveling mercies during this final trip to New York.
5) Ask for the Lord’s peace to cover Holden while we are gone.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Saturday, April 2, 2005
Hello Friends,
Our bags are packed and we are preparing ourselves to leave for NY tomorrow. It has been a rather uneventful week, except for our upcoming trip looming over our heads. On Wednesday, I started giving Morgan GMCSF shots to prepare us for the trip. Hopefully, in two weeks I will never again have to give my child a shot.
Morgan had a really good week at school. Sometimes she is really focused and sometimes she is really distracted. This week she was right on track. I cannot believe that kindergarten is almost behind her. When we come back from NY, she will have six more weeks of kindergarten. She received her report card on Thursday, and it was the best she has ever received. She has improved in all areas. I am very proud of her. She is also proud of herself, which is very important.
The only involvement we had this week with the medical community was Morgan’s OT session and an OB appointment for me. Morgan is still doing very well in therapy. She has made a lot of progress. The most noticeable improvement I see is that her fine motor skills have improved. She is making slow progress, but progress nonetheless. My appointment on Friday was very routine. I have gained 12 pounds now and Lyndie seems to be doing great. She is very active and moves around all the time (just like her big sister did). Morgan is so excited about having a little sister. Holden is excited about having a little brother and we are having some difficulty explaining to him that we are only having one baby and it is a girl. I contacted Duke last week about banking this baby’s cord blood and I am waiting for them to call me back. From what I understand, this should not be a problem at all. It will certainly make me feel better knowing that we have it on hand just in case Morgan (or Holden or Lyndie) ever needs it.
Morgan has grown to absolutely hate soccer. However, you can see in your picture that she looks rather cute while playing. Today she got angry every time the coach put her in to play. Morgan is a child who never likes to be wrong. I keep reminding her that I told her when I signed her up that she might want to reconsider because I knew she would not like it. Every time I say that, she says “I do like it” tries to convince me that she is having fun. This will be Morgan’s last season playing soccer. Holden loves soccer and always wants to be part of the action. His picture is in the photo album and he also makes a striking athlete. Holden is going to play outdoor soccer in the spring and Jerry is going to coach his team. That will be good for some father/son bonding time.
We are not able to mention in front of Morgan that this is her final trip to NY. She loves going to the Big Apple and does not even want to think about the prospect of not returning. She never ceases to amaze me. If I had to go through 3F8 treatments, I would never want to see that place again. Holden feels more like me and he is glad this is the last time we are leaving. We have hugged a lot today and cried together. It is so sad because he knows what is happening but is really too young to express his frustrations. Therefore, it manifests itself in other things. He breaks down into a tantrum if he can't find his security Lambie. He cried for the longest time today because he could not take his shoes off at Grandma and Grandpa’s house. He has been so clingy to me the last few days. Every time we go to NY he is a little more mature and it is a little harder for him. Praise the Lord that this is it.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
4) Ask the Lord to grant us traveling mercies during this final trip to New York.
5) Ask for the Lord’s peace to cover Holden while we are gone.
Look for another update on Monday after the first day of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Friday, March 25, 2005
Hello Friends,
I don’t think that I have ever gone this long without doing an update. It has been almost two weeks. This is the part where I normally apologize and tell about how busy we have been.
Last Monday, I woke up ready to start a normal workday. However, it took me about 1 minute to realize that I had contracted the stomach virus that had plagued Morgan and Holden the previous week. I have not felt that bad in a long long time. I sent both kids to school and I did not get off the couch for the entire day. That virus either affected me a lot differently than the kids or I am a bigger wimp than the kids. Morgan and Holden never really acted like they felt bad. I thought I was dying. Fortunately, it did not take as long to run its course in me as it did in the kids.
Morgan and Holden are both officially past their viruses. But, it was early in this week before they were both “cured”. They have also had coughs recently. Of course, it is taking Morgan a lot longer to get over hers than it did Holden. Her immune system is still weak and probably always will be.
Morgan has been out of school for spring break for the last two weeks. She had to go Monday (my sick day) to make up a snow day. On Tuesday, she had an appointment with the otolaryngologist. Her audiologists referred her to Dr. Kirse when they noticed that she had some pressure issues in her right eardrum. Dr. Kirse examined her ears and said that her eardrums are very close to being perfect. In fact, this issue would not have been noticed by anyone if not for all of Morgan’s other issues. As of right now, the plan is to do nothing about Morgan’s eardrum issues. However, Dr. Kirse does want to see Morgan every six months. No big deal – just another doctor to add to her long list that she sees on a regular basis.
The kids and I spent the rest of last week just hanging out. After the kids played soccer on Saturday, we left for the beach. Betsy Smith, a dear co-worker of mine, gave us use of her timeshare condo at Myrtle Beach for the week. It was a wonderful vacation. Thanks so much Betsy. It was just what this family needed. The kids loved the indoor pool and Jerry and I loved being away from the hustle and bustle of life. Grandma and Pawpaw even came down to spend some time with us. Morgan and Holden loved that. We dyed Easter eggs while there and basically just relaxed as much as possible. Morgan did manage to put us on edge for a few days. The first few days we were there she acted like she was completely exhausted for good portions of the day. One night, she went to bed at 5:30 and slept until the next morning. Once or twice she even felt a little warm, although we did not take a thermometer on vacation with us. This on top of that terrible cough certainly got my feathers ruffled. However, it must have been the remnants of the stomach virus, the chest cold, and/or wearing herself out in the pool each day. She seemed to be fine later in the week. We were actually supposed to come home tomorrow. Check out was at 10:00. After spending some time on the beach and in the indoor pool this morning, we decided to come on home today. We did not want to spend all day in the car tomorrow.
We will spend the next week getting ourselves ready to go to New York. I cannot believe that Morgan’s final treatment is quickly approaching. I am not sure what life will be like when I am not planning everything around trips to New York for treatment. I am looking forward to getting this trip behind us and moving on with life.
Happy Easter to you all! Who His own self (Jesus Christ) bare our sins in His own body on the tree, that we, being dead to sins, should live unto righteousness: By whose stripes ye were healed
1 Peter 2:24
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
4) Ask the Lord to grant us traveling mercies as our final trip to New York approaches.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Sunday, March 13, 2005
Hello Friends,
What a crazy week! Morgan woke up early Monday morning throwing up. This is not that unusual for her, especially if she has a cold or her allergies are flaring up. We got her dressed and attempted to proceed with our day as normal. However, she got sick again in the parking lot at her school. Jerry called me and then called the pediatrician. I was in a classroom speaking to the students about registration so I could not leave work immediately. Jerry took her to his office and as soon as I could leave work, I picked Morgan up and took her to the doctor. She was diagnosed with a stomach virus. Since she had scans at the end of February, I was not a nervous wreck. But, I must admit that the thought was going through my mind – What if this is more than a stomach virus?
We came home on Monday and she rested and continued to be sick throughout the day. By Tuesday, she seemed to be fine. On Wednesday, she was throwing up again. I took her by Grandma and Pawpaw’s house with instructions for them to take her to school if she started feeling better. Morgan announced at 9:30 that she wanted to go to school. Mom took her and she made it through the day just fine. I picked her up early to take her to occupational therapy. By Wednesday afternoon, I realized that the vomiting component of the virus was over and the other symptom of a stomach virus had kicked in. I will not elaborate. This is exactly what the doctor proposed would happen.
By Thursday, it was obvious that Holden had the same stomach virus. But, he skipped the vomiting part and moved right on to the other symptom. Life at our house has not been all that fun this week with a kid running to the bathroom every 5 minutes. Keep in mind that one of those children was just recently potty trained and is having much more trouble making it to the potty on time than the other one. Again, I will not elaborate. As cruel as it sounds, I always feel better when both of my kids are sick. This gives me reassurance that it is just a virus.
It seems that it is taking this virus a long time to run its course in both of the kids. I have decided that I will give it until Tuesday before I head back to the pediatrician with both kids in tow just to make sure that it is nothing bacterial that needs to be treated with an antibiotic. Morgan and Holden both act like they are feeling great. Neither has a great appetite right now, but we are keeping plenty of fluids in them.
On Tuesday, I had another OB appointment and sonogram. We took the kids because we thought they would enjoy seeing the sonogram. Morgan enjoyed the first five minutes of it and then she was ready to go. Holden was very well behaved throughout the entire scan. Why is it that I can never get both of my kids to behave at the same time? Lyndon appears to be doing well. She is very obviously female and she appears to have long legs just like Morgan did when she was born. I have gained a total of 11 pounds now and everything seems to be progressing nicely. I am finding that it is more painful to be pregnant at 31 than it was at 25 and 28.
Morgan’s teacher has shared with me that Morgan has been very distracted at school lately. The students recently underwent their assessments since the third quarter is almost over. These assessments are done on an individual basis with each student. Mrs. Shore told us that Morgan was so distracted during assessments that she could not even complete it. Mrs. Shore also told me that she is certain Morgan knew all of the material; she just could not get her focused. This is very frustrating and we are not sure what we can do to increase Morgan’s attention span. We know that medications are available for this sort of thing, but Jerry and I are not eager to pop any more meds in Morgan’s mouth. Quite honestly, she has taken enough medication to last a lifetime. Thankfully, Mrs. Shore took the time to reassess Morgan on Friday and she took her to a separate room to do so. She said Morgan did a terrific job and was either at or above grade level in all areas. Mrs. Shore suggested that when Morgan’s IEP is re-evaluated that we write in this modification for Morgan. In the meantime, I am going to check my resources for what else can be done to help Morgan in this area.
We have three more weeks until we depart for our last trip to NY. The bright side of this is that in less than five weeks Morgan will officially be finished with treatment. April 15 will be a momentous day for the Barnes family. We pray that she will never again have to undergo any type of cancer treatment. We would appreciate it if you would join us in praying for this.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Sunday, March 6, 2005
THE NEW EASTER PICTURES HAVE BEEN ADDED TO THE PHOTO ALBUM!
Hello Friends,
This update is a little late in getting out. Our computer has been acting up. Hopefully I will be able to get this entire update done without any problems.
We have had a great week. It was fairly low-key, but still wonderful. We actually were out of school for bad weather on Monday. I woke up and heard sleet on the window. I flipped the TV on, fully expecting to hear that we had a delay. I was very surprised when they announced that our schools were closed. I guess it is better to be safe than sorry, but the conditions did not seem that bad at all. Morgan and Holden loved having an extra day added to their weekend and I did not mind it either, especially as I was getting a little bit of extra sleep.
On Monday night, the kids had another belt test at karate. They both achieved their green striped belts. It is amazing to see how much they have improved since they started karate back in September. Holden has especially come a long way in that he now spends at least a little bit of time listening to the teacher, rather than running amok during the entire class. Morgan seems to be more willing to take chances in class now. I am seeing a huge improvement in her level of confidence while at karate. I think this is spreading into other areas of her life as well. I am certain that this is a beneficial program for both of my children.
I have been so surprised lately by the number of children being diagnosed with neuroblastoma. When Morgan was first diagnosed, we were told that it was such a rare disease. I think the number that they gave us was that each year 600 children in North America are diagnosed each year. Back in December, a kindergartener at the school where my brother is an assistant principal was diagnosed. About two weeks ago, we learned that our brother-in-law’s business partner’s son was diagnosed. One of Jerry’s childhood friends lives outside of Richmond, VA. We have maintained contact with him and his wife ever since they moved away. Not long ago, I received an email from Ginny, his wife, and she asked me if I would be willing to talk to a lady from their town whose son had been diagnosed. It was so ironic because as I was replying to an email from the child’s mother, my phone rang and it was my aunt. She told me that she had given my phone number to a lady she met whose niece had just been diagnosed. I have been in contact with two of these families. James is the little boy we know of through our brother-in-law. His mother called me on Monday and we talked for two hours. James has had one cycle of chemo and had to be readmitted to the hospital on his third birthday because of fever. SKYLER, the little boy from Virginia, just had his surgery and is preparing to go into transplant. Please add all of these children to your prayer list and ask God to please give us a cure for this horrible disease.
I have been pretty busy at work lately because we are doing registration. This is normally one of the busier times for school guidance counselors. Jerry has been taking Morgan to school as a result. On Tuesday he took her in and her teachers asked him if it would be okay for Morgan to have a speaking role in the kindergarten class play. Of course, he enthusiastically said yes. The teachers said that she really excels in this area. She loves to be in front of a crowd performing and is very animated. I don’t think she gets this from her mother or her father. We are very proud of her and cannot wait to she her make her stage debut.
Morgan has improved so much in soccer in the last week. She is still not the greatest athlete on the team, but at least this week she did seem to be more “into” the game. I think she has an understanding now of the purpose of the game. The first time she played, she skipped and danced around the court in her own little world. This week she managed to follow the action of the game and even managed to kick the ball twice. Sometimes I watch her and it brings tears to my eyes. She is alive and thriving. I am sure that most of the spectators see a prissy little girl with an awkward gait when she runs. I look at her and see a walking miracle. I thank God everyday for that.
Holden is still not “Bending it like Beckham” in the soccer arena. He did mange to score a goal on Saturday. That was because he was lying down (I am not sure why) on the floor down by the goal. A player on the opposing team kicked the ball in the wrong direction (as 3 and 4 year olds tend to do). He was the only one close to the ball so he stood up and kicked it. It rolled past the goalie. He then laid back down. For some reason, he likes to “trip” and then look around to see how many people saw him go down. Or sometimes, he will go and watch the game that is taking place on the adjacent court. He is one of the youngest ones on his teams. It is a fairly obvious fact when you watch him play. He seems to be having a good time and that is all that matters.
I am now counting down the weeks until our return to NY. We will be back in the Big Apple four weeks from tonight. That is a bit depressing, but then I think that in six weeks Morgan should be totally finished with treatment. That is something to rejoice about. Right now, the computer is making a noise that does not sound so good so I had better turn it off before it explodes.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Sunday, February 27, 2005
Hello Friends,
I guess you figured out by now that my lack of an update meant that everything was fine with Morgan’s tests and scans. I called on Wednesday and got the official results. The MIBG scan was fine, the bone marrow aspirates showed no tumors, and the CT scan was also clear. The nurse practitioner brought it to my attention that Morgan has a cyst on her kidney. I assume that she has had it for quite some time because she said that the report read as a “stable cyst” (meaning that it has not grown since previous scans). The nurse said that some people just have cysts on their kidneys. I am not sure what kind of follow-up we will do regarding this. One of Morgan’s urine markers was slightly elevated and the other one was on the high side of normal. The doctors are assuming that it was something she ate since all other tests showed no evidence of disease. These tests can be sensitive to a wide variety of foods. Her number was over by just 0.2 so they are not worried about this. We have not heard from the bone marrow biopsies yet, but I am thinking that they would have called by now if something had been off.
I also called New York on Wednesday to get the results of Morgan’s HAMA test. Believe it or not, she is still negative. This means that cycle number 13 is in her future. We will return to NY on April 3 for what will be Morgan’s last cycle of treatment whether she HAMA’s or not. The end of treatment is finally in sight for us and it is a good feeling.
Morgan had to go on Tuesday and get three more shots in the quest to be re-immunized. The nurses at her pediatrician’s office said that she would be up to date after these three and would need no more. Of course I shared this information with Morgan. On Thursday, I took the final record to work to make some copies of it before sending it to Morgan’s school. As I was looking at it I noticed that parts of the immunization record looked kind of empty. As a school counselor, I am somewhat familiar with the immunization requirements. I ran it by the school nurse and sure enough, Morgan needs three more shots before she has met the immunization requirements of the state for school purposes. I have not shared this with Morgan yet but I am sure she will remember what I told her about no more shots when I take her in in May for the last three.
I woke up on Wednesday having some problems and had to call the OB. They told me to come in immediately. After being checked out completely, the doctor could not find a reason for the problems and ordered a sonogram. I was alone and the technician asked me if I wanted to know the sex of the baby if she could tell. I thought about waiting until March 8, the date of my scheduled sonogram, but was just too anxious. We are having another girl and she appeared to be very healthy, according to the sonogram. The new baby’s name will be Lyndon Victoria. Morgan is named after me, as my maiden name is Morgan. Holden was my grandmother’s maiden name (Mamie Holden Morgan) and Lyndon was Jerry’s grandmother’s maiden name (Delia Lyndon Batten). Morgan has already informed me that she does not like our choice of names because Lyndon is a boy’s name. We will probably refer to the baby as Lyndie while she is young and then she can be Lyndon or Lyndie in her adult years. Morgan wants to name the baby Pinkie Gladys Gutzman (from Junie B. Jones, Morgan’s favorite literary character). Holden wants to name her Rachel, although this is my niece’s name. Holden is also ticked off that we are not having a boy. He is not mad that we are having a girl; he just wanted a boy and a girl. He has already told many people that we will have a brother for him next.
Thursday night we took the kids to have their Easter pictures taken. What a nightmare! It used to be so easy to get good pictures of them. I don’t what has changed since our Christmas pictures were done, but this photo shoot was a chore. It was impossible to get a good shot of both of them. Most of the time, we could not even get one of them to smile. They looked like two very sad little children. I am just glad that I won’t be doing that again until Christmas. We did manage to get a decent shot of the two of them and then one good shot of each one individually. I will post them as soon as I get them back.
Morgan and Holden started soccer this week. They had practice on Tuesday night and this was not a good night for Morgan. She endured three shots and then went to dance class for an hour. Then, she went to soccer practice for an hour. She was thoroughly exhausted after the first ten minutes of soccer practice. To me it did not seem like she liked soccer at all. Holden on the other hand was very into it. Saturday was game day. They both seemed to have a good time at the game, although neither was tuned into the action at every moment of the game.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Sunday, February 20, 2005
Hello Friends,
I wanted to wait until today to type this update. Today is certainly a day to remember for us. Two years ago Morgan’s stem cells were placed back into her blood stream after her bone marrow was virtually killed after 96 straight hours of chemo. I am watching her now and can’t even believe that it was the same child. Two years ago Morgan was bald, swollen, and in so much pain that she could not even speak. She just sat in her hospital bed with her eyes closed because she wanted everyone to leave her alone. Right now, she is organizing a dance recital for us. All of her dolls and stuffed animals are lined up to be the audience. She is gathering pom-poms, a cane, a baton, drumsticks, a microphone and every other prop she will need for her show. She has given Holden a guitar and has instructed him to play while she dances. Although there seems to be some bit of controversy and I can already tell that I will be breaking up a fight in just a few seconds. It seems as if the guitarist is taking the rest of the props and running away with them making the dancer quite angry. We give God all the glory for how far Morgan has come in the past two years. To look at her there is no evidence of the battle she has fought other than a few scars on her body. God is good – all the time!
It was a very busy week. On Wednesday, I took Morgan to Baptist Hospital for a check-up at the oncology clinic and her MIBG injection. Following the injection, she had an appointment with her occupational therapist. Morgan is doing well in OT and has certainly come a long way since she started this past summer. I am hoping that by the time she starts first grade she will no longer need these services.
Thursday was grueling. We were told to be in nuclear medicine at 9:00 so Morgan could be sedated for the MIBG scan. This is a rather long scan and the machine gets very close to Morgan’s face, which makes her very tense. Therefore we know it will be less stressful for all of us if Morgan can be put to sleep. However, they told us it would be 10:30 before they were ready. No one was quite sure why we had been told to be there so early. Fortunately, the nurse who sedates Morgan made a few phone calls and it was decided that we should immediately go upstairs because they could do the bone marrows. It took about an hour total to complete the entire bone marrow procedure and then we went back to nuclear medicine. This actually made things a bit easier for us. Morgan had to have propofal to put her to sleep during the bone marrows. When she woke up she was still tired and hateful. The walk downstairs was not fun, but they put her in a playroom by herself when we got there and she climbed up on my lap and fell asleep. This made things very easy when it was time for sedation. The MIBG scan ended up taking about 2 hours. At Baptist, they prefer to do two different MIBG scans on Morgan. They do the first one and then do a spec of the abdomen. The spec is a 3D image. I could tell there was some sort of problem before we even left the department. Several extra people came into the room to look at the images on the computer screen and they stood in a corner and spoke in hushed tones. The mood of the room went from calm to confused and chaotic in a matter of seconds. When they finally let us leave one of the doctors or nurses or somebody said, “Well, good luck to you” in a very somber tone. It has been a long time since I have heard that line when leaving a scan and after living in the cancer world for so long I have come to learn that it is not a positive thing.
The more I thought about this, the more worried I became. Before we even left the hospital, I called Morgan’s nurse practitioner and wanted to know how long it would be before we got the results. She told me she would be in touch later in the afternoon. She called me back around 3:30 to tell me that she did not have anything back yet. She wanted to know why I was so concerned because my phone call alarmed her since it was a bit unusual for me. I told her about the confusion in the room and she said she would be in touch. Nuclear medicine did not post the results before she went home from work for the day. Needless to say, I was pretty tense on Thursday night. I had trouble sleeping and kept seeing the “Good Luck” lady in my dreams.
Friday was a much easier day. The first thing we had to do was return to the audiologist so they could do a repeat tympanogram of Morgan’s ear. This one was not normal either. They believe Morgan has some type of tube defect in her ear(s). We made an appointment to see a specialist next month. This is no big deal at all. The worst-case scenario is that Morgan will have to have tubes put in her ears. It is not related to her hearing loss or cancer at all. It is a totally separate issue.
After this, we went down to get a CT scan. We had to wait awhile because they had an unexpected case with an infant who had been in surgery and needed a CT scan. When it was finally Morgan’s turn, Grandma Vicky stayed in the room with her since the CT machine emits too much radiation for pregnant women to stay in the room. Morgan did fine and the entire experience was pleasant compared to the previous day. The nurses and technicians joked with us and I had a much better feeling after that scan than I did when I left the MIBG scan.
Of course, the next thing we did was go up to the oncology clinic and park ourselves to see if we could find out some news about the MBG scan. We had to wait awhile there and the longer I waited the more worried I got. Nancy, the nurse practitioner, finally came out and told me that the preliminary reports from the MIBG scan were fine. Everyone was in an uproar because there was a lot of uptake in the area around Morgan’s port. Well, this finally made sense when someone figured out that this was the point in her body where the isotope was injected and therefore it is normal to have uptake around it. I was so relieved that I almost cried.
That is the only report we have back at this point. Nancy told me to call the clinic after we get HAMA results on Tuesday or Wednesday and they would let me know about the rest of Morgan’s tests. Please continue to pray that all of the final results are as encouraging as the preliminary MIBG report.
Since then we have just enjoyed being a family and celebrated the progress Morgan has made in the last two years. Nothing formal really – just spending time with the four of us together with as few distractions as possible. It has been a nice weekend.
I will do another update next weekend unless something goes drastically wrong with the reports of Morgan’s scans and tests. Hopefully, you will not hear from me.
Prayer Requests:
1) Ask that all of Morgan’s final results of testing show no evidence of disease.
2) Ask the Lord to never again allow cancer to grow in Morgan’s body.
3) Please don't forget about all the other Neuroblastoma Warriors.
4) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Saturday, February 12, 2005
Hello Friends,
This past week flew by. Weeks seem to pass by a lot faster when we are home than when we are in New York. It was a good week because we were all at home together.
Today is one of those milestone days. It was two years ago today that Morgan checked into Duke to begin the process of her stem cell transplant. It seems unbelievable that two years have passed us by since those horrible days of transplant. In just eight days, we will commemorate Morgan’s two-year transplant anniversary. Jerry and I have tried to never allow ourselves to get bogged down in the statistics of this disease. However, I remember Morgan’s doctor at Duke told us that when she reached two years post-transplant her chances of relapse drop from around 50 percent to around 25 percent. We are not planning a party just yet. We have to get through this upcoming scan week. Perhaps we will be ready to party when all of these upcoming scans and tests come back showing no evidence of disease. Please join us in praying that they will.
I went to the doctor on Tuesday. The baby still seems to be doing fine, but I must admit I did get worried at first because the nurse had a much more difficult time finding a heartbeat. But, she eventually found it and it sounded great. I have gained another five pounds so one of us is definitely growing. I am not too terribly convinced it is the baby and am leaning more toward the theory that I am the one growing. They were not able to do the scheduled blood work because there is a discrepancy between my calculated due date and the due date that my first sonogram showed. It seems the sonogram due date is a week behind. Therefore, since I need to be 16 weeks for these blood tests to be accurate they advised me to go back next week and have the blood work done. I am not sure when I will work it into my schedule but I guess I will find a way. On March 8, we will have our “big” sonogram to find out the sex of the baby. I guess I should say to try to find the sex of the baby. Our dear little Holden never cooperated and we did not know he was a boy until the moment he came into the world.
On Wednesday, Morgan had her hearing test. She has to have them every six months now. There are no major changes in her hearing. She still has high frequency hearing loss in both ears, but at this point she still does not require hearing aids. The most alarming news was that she has a “silent” ear infection in her right ear. The eardrum was not really red and they could not see any fluid, but it was not the translucent shade that they like for it to be. Plus, when they did a tympanogram of her right ear the shape was totally off. They said this was due to the issues with the right ear. At this point, we are letting it ride to see if she gets over it but they do want me to bring her in next week to get another tympanogram done. This is fine since we will be at the hospital three days next week anyway. Frequent ear infections could further damage Morgan’s already compromised hearing so it is frustrating that she has a “silent” one. It would be much better if she had one with symptoms so that we could treat it to prevent further damage.
My dear friend, Heather, had her baby last night. Tanner James McLeod came into the world a very healthy 9 pounds and 11 ounces. Both mother and baby are doing fine. Of course, Heather is no longer working so if you would like to participate in Morgan’s prayer vigil next week, don’t email her at the address that I have been posting on the page. That is her work email. If you would like to pray for Morgan and have not scheduled a time yet just email me and I will get the message to Heather.
Prayer Requests:
1) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease..
2) Ask the Lord to never again allow cancer to grow in Morgan’s body.
3) Please don't forget about all the other Neuroblastoma Warriors.
4) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK, WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Saturday, February 5, 2005
NEW PICTURES HAVE BEEN ADDED TO THE PHOTO ALBUM!
Hello Friends,
We are home and very happy about that. We got in a little later than we planned last night due to air traffic at La Guardia. It was a lot easier than taking an 11 hour trained ride that became even longer due to sitting motionless on the tracks in Newark for three hours.
Friday’s treatment was great. We did not pre-treat Morgan with any meds other than oral benedryl. She did not complain of pain at all throughout treatment. In fact, she sat in her bed and played with toys. She would not even lie down. After everything was over and Morgan’s port had been de-accessed, she told me that she needed some pain medicine. I said, “Okay, but your line is out and they will have to give you a shot”. Morgan immediately announced that she was ready to leave clinic.
Morgan was very excited to be home last night and Holden was very excited to have us home. Both of them talked non-stop and I was not really sure if we would ever be able to get them settled down for the night. I think they both were asleep by 10:30. And of course they both woke up bright and early this morning leaving no time for Mommy and Daddy to sleep in. But, that was okay since we had to be at the church this morning to have directory pictures taken. Then, we had some errands to run.
Tonight we will celebrate the second birthday of my sweet niece, Rachel. Her birthday is a tremendous milestone for me because I remember going to the hospital to see her shortly after her birth. I knew that in the coming days our family would be heading to Durham so Morgan could be admitted to Duke for her stem cell transplant. I quietly wondered if Morgan would ever have the chance to get to know her “Girl Cousin”. Rachel will be two on Monday and Morgan loves her dearly. God has truly blessed us.
We plan on resuming our active lives this week. Morgan will return to kindergarten and I will go back to work. It will be good to feel normal again, but we will not be exactly normal since scan time is right around the corner. Morgan has been complaining of a few aches and pains lately and that always causes worry for me. Heather kept her promise to me and she did not have her baby while I was in New York. She is still organizing a prayer vigil for Morgan and the rest of our family during scan time. Morgan will undergo her testing on February 17 and 18 at Brenner Children’s Hospital. If you are interested in signing up for a half hour time slot, please email Heather at HmcLeod@BbandT.com.
Prayer Requests:
1) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease..
2) Ask the Lord to never again allow cancer to grow in Morgan’s body.
3) Please don't forget about all the other Neuroblastoma Warriors.
4) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Thursday, February 3, 2005
Hello Friends,
Morgan had another great afternoon yesterday. Her mood was wonderful after all the drugs got out of her system. Last night, our friends from New York Life provided dinner for us. They also had arts and crafts for the kids. Morgan loved this. She had a great time and we had a nice meal. After we got back to the room, Morgan had her bath and then announced it was bedtime for her. She was asleep by 7:30. She has always been my good sleeper. My sweet Holden will fight sleep until he can fight no more. Morgan loves getting a good night's rest.
Today's treatment was so much better than the last few days. I know that lots of you must have been praying for us and we certainly felt it today. Morgan made it through treatment today with no pain meds. She did not even ask for any until the very end and it was obvious that she was not in pain when she asked for them. She wanted them because she is a creature of habit. We had to deal with her crying because she wanted pain meds for a while, but when the nurse came in and disconnected her and put saline and heparin in her line that seemed to satisfy her. She was a little irritable due to benedryl and vistaral, which are used to pre-treat Morgan. However, she was pretty close to perfect as we came back to the RM House. It was so much better for all of us. Tomorrow our plan is to not give her any IV drugs to pre-treat at all. I am going to give her an oral dose of benedryl before we head to the hospital tomorrow.
Maybe HAMA is right around the corner. If tomorrow goes as well as today, then my hopes will definitely be up. Please pray that Morgan has HAMA and this is her last neuroblastoma treatment ever.
We have already started the process of packing our bags. Morgan is sitting right here beside of me playing on Nick Jr.'s website while I type this. All three of us are very anxious to get back home. Our car is coming to pick us up tomorrow at 1:00. Our flight should leave New York at 4:20 and the wheels are due to touch down in Greensboro at 6:15. I probably will not do another update until Saturday, but I may be able to get down here if we get out of clinic early enough tomorrow. Please pray for a safe flight home for us tomorrow. Ask the Lord to allow it to be a little less exciting than our train ride up here.
The dates for Morgan’s next set of scans have been set for February. She will have her MIBG scan and bone marrow biopsies/aspirates on February 17 and a CT scan on February 18. We are doing the scans at home again. My friend, Heather, is once again putting together for a prayer vigil for Morgan and the rest of our family during this stressful time. If you are interested in signing up for a half hour slot of time on these two days, please email her at HMcLeod@BBandT.com. Heather is days away from having a baby so you may want to email her as quickly as possible to help her get this thing lined up. She did promise me that she would not have the baby until I get home from NY, but this is a promise that she may not be able to keep.
Prayer Requests:
1) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease.
2) Pray for the Lord to protect our travels home tomorrow.
3) Ask the Lord to never again allow cancer to grow in Morgan’s body.
4) Please don't forget about all the other Neuroblastoma Warriors.
5) Pray that Morgan will get HAMA at some point during her course of treatment and that every treatment she has had has been effective.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Wednesday, February 2, 2005
Hello Friends,
Today is Grandma's birthday. What a way to celebrate it! Actually, today was supposed to be the day that Mom retired from USAirways. However, she elected to quit work soon after Morgan was diagnosed with cancer because she felt like we needed her more than the airline needed her. That was very true. She has made this journey a little (well a lot) easier for us. Fortunately, my father has been right there for us too in supporting both Mom and the rest of us. I truly do have terrific parents.
Yesterday was a typical afternoon for Morgan. She rested, watched videos, played in the playroom, and around 8:00 said goodnight and went to bed. I watch her in the afternoons after she has recovered and I wonder how such a sweet child could have possibly acted so hideously earlier in the day. The truth is that she has no memory of how she has behaved earlier. The drugs make her totally unable to control her actions. It is very sad. The nurses asked me about her temper tantrums at home and honestly she does not have them. She has always been a very strong-willed child, but when she is not under the influence of drugs we can at least reason with her. This is just another example of how life is so terribly unfair. She has done nothing to deserve this and yet so much of her young life has been filled with hardship. She is in a good place now and I am very thankful for that, but that still does not make looking back at her life since July 2002 without feeling some regret.
Today was even worse than yesterday and I did not think that was possible. Her pain did not seem nearly as intense and it was not as obvious that she was in pain. We decided to try the ativan on the flush and that was a huge mistake. She was calm for about 20 minutes after treatment and then it all broke lose. She was out of control once again. I will admit that she got to me today. It took forever to get her into her stroller and out onto the street. She kept screaming and raging and finally I walked away. I headed in the other direction because I could feel my own rage building. I am aware that she is not in control of her actions, but I had just had enough and separation was the best thing for me at the moment. I took a walk around the block in the other direction just to cool off for a bit. Morgan was no better when I finally caught up to Mom and her. After we got back into the room, it was at least 30 minutes before she became calm. It was a very long 30 minutes. I briefly discussed our options with Morgan's nurse and I think tomorrow we are going to try valium to see if that will keep her calm. It may not work, but it can't be any worse than what we have experienced for the last few days.
Morgan's attitude changed after the drugs had an opportunity to work their way through her system. She watched one video and then asked if she could come down to the playroom. She is playing as I type this. At least we only have two more days of this until we get to go home.
We are planning to go out to eat tonight for Mom's birthday. Dad sent a gorgeous bouquet of roses to Mom and it helped to brighten all of our spirits.
The dates for Morgan’s next set of scans have been set for February. She will have her MIBG scan and bone marrow biopsies/aspirates on February 17 and a CT scan on February 18. We are doing the scans at home again. My friend, Heather, is once again putting together for a prayer vigil for Morgan and the rest of our family during this stressful time. If you are interested in signing up for a half hour slot of time on these two days, please email her at HMcLeod@BBandT.com. Heather is days away from having a baby so you may want to email her as quickly as possible to help her get this thing lined up. She did promise me that she would not have the baby until I get home from NY, but this is a promise that she may not be able to keep.
Prayer Requests:
1) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease.
3) Pray for the Lord to protect us while we are in NY and to make Morgan’s treatments effective.
4) Ask the Lord to bless Holden during our time of separation.
5) Ask the Lord to never again allow cancer to grow in Morgan’s body.
6) Please don't forget about all the other Neuroblastoma Warriors.
7) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Tuesday, February 1, 2005
Hello Friends,
Morgan had an okay day yesterday following treatment. She never allowed herself to take a good rest, so her attitude was a bit off for most of the afternoon. She did come down to the playroom for a little while and she had a good appetite. She was in bed by 8:00 and asleep by 8:30. She woke up in a decent mood this morning.
Today's treatment was a tough one. It was obvious that she was in a lot of pain. The nurses keep telling me that HAMA is right around the corner, but I just don't see it. If today was any indication, she still has a long way to go before she reaches HAMA. It will be rather frustrating to me if she goes through 13 treatments and still does not get HAMA. What has it all been for?
She only needed two half-doses of dilaudid today. But her face got bright red and it was obvious from her actions that she was hurting. After treatment she was fine for a little while, but then she just sat up in the bed and started talking crazy. She started yelling at me telling me that she was not going to return her library books and I could not make her do it. I asked the nurse if there was anything that could help her to relax and she suggested ativan. Morgan used ativan back in the early days of her cancer diagnosis and it always made her wired rather than tired. We gave her a dose today and it did manage to calm her for about 20 minutes. Then, after 20 minutes she started right back into one of her crazy states. We managed to get her back to the room and then her craziness became hysterics. She started crying uncontrollably and asking me if someone was going to come in and take her away from me. Then she started obsessing about someone breaking into our home in NC. Then she cried and told me that she did not want anyone to put her in jail or a dog cage. Her comments were totally off the wall. Renae, Mom, and myself finally managed to convince her that everything was okay. She was calmly watching TV, drinking gatorade, and eating popcorn and then she started throwing up. She has had a very rough afternoon. She was fine when I left the room and hopefully the remainder of her day will be pretty good.
On the bright side, we only have three more days of treatment and then we are heading south.
The dates for Morgan’s next set of scans have been set for February. She will have her MIBG scan and bone marrow biopsies/aspirates on February 17 and a CT scan on February 18. We are doing the scans at home again. My friend, Heather, is once again putting together for a prayer vigil for Morgan and the rest of our family during this stressful time. If you are interested in signing up for a half hour slot of time on these two days, please email her at HMcLeod@BBandT.com. Heather is days away from having a baby so you may want to email her as quickly as possible to help her get this thing lined up. She did promise me that she would not have the baby until I get home from NY, but this is a promise that she may not be able to keep.
Prayer Requests:
1) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease.
3) Pray for the Lord to protect us while we are in NY and to make Morgan’s treatments effective.
4) Ask the Lord to bless Holden during our time of separation.
5) Ask the Lord to never again allow cancer to grow in Morgan’s body.
6) Please don't forget about all the other Neuroblastoma Warriors.
7) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Monday, January 31, 2005
Hello Friends,
I hope everyone had a good weekend. Ours was okay; we did not really do that much. Renae arrived Saturday morning and we went out for breakfast at our favorite diner, the Three Star. After breakfast we went to the Disney store since it had just recently been remodled and we thought Morgan would enjoy it. She did enjoy it, but after we finished there she was ready to come back to the RM House. We spent the rest of Saturday afternoon here. Morgan did not even change out of her pj's yesterday. She had no desire to go anywhere. Mom and Renae went for a walk, but Morgan and I stayed here.
Morgan did not act like she felt great this weekend. On Saturday night she had a hard time sleeping. She kept waking up complaining that her belly was hurting. She complained a few times on Sunday. At 6:30 last night, she announced she was going to bed and she slept until 7:00 this morning. I'll admit that I am kind of worried about her. She has been fine today, with no complaints whatsoever. Her white count was really high today due to getting GMCSF shots over the weekend and not receiving treatments. I am hoping and praying that this was the contributing factor to her overall feeling of yuckiness. Her ANC was over 20 today so she did not get the shot. We will see if she needs it tomorrow.
She did not seem to have much pain today during treatment. She asked for two doses of pain medicine. I forgot to tell the nurse that she only takes half doses, so the first dose was a full one. The second one was only half. By the time we were ready to leave, the pain medicine was hitting her pretty hard. Her behavior was much like it was on Thursday and Friday. She calmed down after being back in the room for about 30 minutes. She is actually being very sweet right now. It is so weird the way pain medications affect her.
Only four more days of treatment until we head back home.
The dates for Morgan’s next set of scans have been set for February. She will have her MIBG scan and bone marrow biopsies/aspirates on February 17 and a CT scan on February 18. We are doing the scans at home again. My friend, Heather, is once again putting together for a prayer vigil for Morgan and the rest of our family during this stressful time. If you are interested in signing up for a half hour slot of time on these two days, please email her at HMcLeod@BBandT.com. Heather is days away from having a baby so you may want to email her as quickly as possible to help her get this thing lined up. She did promise me that she would not have the baby until I get home from NY, but this is a promise that she may not be able to keep.
Prayer Requests:
1) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease.
3) Pray for the Lord to protect us while we are in NY and to make Morgan’s treatments effective.
4) Ask the Lord to bless Holden during our time of separation.
5) Ask the Lord to never again allow cancer to grow in Morgan’s body.
6) Please don't forget about all the other Neuroblastoma Warriors.
7) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Friday, January 28, 2005
Hello Friends,
The end of the first week of treatment is finally here. Yippee! We are on the downhill slide now and by this time next week, we will be getting ready to start our journey home. We are hoping and praying for a much less exciting trip home and for weather that is more appropriate for travel.
Morgan had another good afternoon yesterday. She watched some videos, came down to the playroom, and did some homework. Last night a Jewish synagogue came in a sponsored a dinner for us. It came complete with music and dancing, which Morgan loves. They had a little band and they gave the children tambourines and marraccas and let them play along. Morgan loved this. Then, they served us a traditional Israeli meal. It was very different from anything I have ever had before, but it was quite good. Then, they entertained us with Hebrew dancing. It was a great evening.
Morgan's treatment today was not really out of the ordinary. She asked for pain medicine three times. We managed to get by with giving her two half doses and then a fake dose of saline at the end. It is so hard to tell if she has pain or not because she expects the pain medicine. In fact, she likes receiving the pain medication. It must give her some sort of rush as it is going in. She had a few hives today, which is not a good sign if we are expectantly waiting on a HAMA. She also developed a really bad cough during treatment. They had to give her a breathing treatment, which she hated. This put her in a terrible mood and getting her out the door today was almost as hard as getting her out the door yesterday. Her ill mood lasted for about 20-25 minutes today. After we got her calm, she put in a video and she was fine when I left the room to come down and type this update.
We do not have any set plans for the weekend. Our friend, Renae, is going to come up and visit with us for a few days. I plan on relaxing and trying to do something entertaining for Morgan. However, if it means going outside it means we are going to be cold. At least it will just be frigid with no winter precipitation falling. They are expecting snow and ice at home this weekend. We hate we are missing that!
The dates for Morgan’s next set of scans have been set for February. She will have her MIBG scan and bone marrow biopsies/aspirates on February 17 and a CT scan on February 18. We are doing the scans at home again. My friend, Heather, is once again putting together for a prayer vigil for Morgan and the rest of our family during this stressful time. If you are interested in signing up for a half hour slot of time on these two days, please email her at HMcLeod@BBandT.com. Heather is days away from having a baby so you may want to email her as quickly as possible to help her get this thing lined up. She did promise me that she would not have the baby until I get home from NY, but this is a promise that she may not be able to keep.
Prayer Requests:
1) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease.
3) Pray for the Lord to protect us while we are in NY and to make Morgan’s treatments effective.
4) Ask the Lord to bless Holden during our time of separation.
5) Ask the Lord to never again allow cancer to grow in Morgan’s body.
6) Please don't forget about all the other Neuroblastoma Warriors.
7) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Thursday, January 27, 2005
Hello Friends,
New York City is very cold right now! In my opinion, it is too cold to go out on the street for even a few moments. This makes our trek back and forth to clinic fun, but at least we don't have any other places to go and can keep warm in the room for the rest of the afternoon.
Morgan had another good afternoon yesterday. Once again, she occupied her time with watching videos and going down to the playroom. We even managed to get a little school work done. Her biggest problem yesterday was that her feet hurt. As I said yesterday, this is a common side effect of 3F8. I gave her some Tylenol and about an hour later she was still complaining. So I had to break out the big guns and give her a dose of oral dilaudid. I hate to give her narcotics unless absolutely necessary. There were warnings all over the label that it would make her sleepy. Well, you all know how Morgan reacts to meds and of course it did not make her drousy in the least. She was high as a kite, but she was very pleasant. She just could not stop talking. She talked and talked and talked. Her feet stopped hurting and that was really all that mattered to me.
Today's treatment was even easier than yesterday. Keep those HAMA prayers coming, we may be getting closer. She only needed half a dose of dilaudid. She asked for some more after treatment was over, but I don't think she needed it. As easy as treatment was today, getting her out of clinic was a real task. She was not ready to leave at all. This was made worse by the fact that she did not want to put on any of her winter wardrobe to face the cold weather. It took Mom, a nurse, and me to get her dressed. She screamed the entire time. Another nurse called down to the room over the speaker and asked Morgan what was going on and if she needed any help. Cat, the nurse who was helping with the dressing, told Morgan that if she did not calm down they would have to call security. This did not phase Morgan in the slightest. We finally managed to get her into the stroller and she screamend all the way up First Avenue (it was just like old times). It was so cold and Mom and I were walking fast just to stay warm so we both managed to ignore Morgan. It only took Morgan about 15 minutes to calm down after we got back to the room. We hugged and cuddled and told each other we were sorry and then she started watching her videos again. She is still watching videos and plans on coming down to the playroom after she has had some time to rest.
The dates for Morgan’s next set of scans have been set for February. She will have her MIBG scan and bone marrow biopsies/aspirates on February 17 and a CT scan on February 18. We are doing the scans at home again. My friend, Heather, is once again putting together for a prayer vigil for Morgan and the rest of our family during this stressful time. If you are interested in signing up for a half hour slot of time on these two days, please email her at HMcLeod@BBandT.com. Heather is days away from having a baby so you may want to email her as quickly as possible to help her get this thing lined up. She did promise me that she would not have the baby until I get home from NY, but this is a promise that she may not be able to keep.
Prayer Requests:
1) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease.
3) Pray for the Lord to protect us while we are in NY and to make Morgan’s treatments effective.
4) Ask the Lord to bless Holden during our time of separation.
5) Ask the Lord to never again allow cancer to grow in Morgan’s body.
6) Please don't forget about all the other Neuroblastoma Warriors.
7) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Wednesday, January 26, 2005
Hello Friends,
Morgan had another good night last night. After resting in the room for awhile, she woke up in a very pleasant state of mind. She wanted to go down to the playroom to play with her buddy, Carter. The two kids had a very nice time playing and doing arts and crafts. I am so glad Carter and Morgan get along so well because it gives her the opportunity to interact with someone her own age while she is here. She needs that and it keeps her from being bored out of her mind.
Our only problem last night was that she complained about her feet hurting around 7:30. This is a very common side effect of 3F8. I gave her some Tylenol and that did the trick.
Today's treatment went very well. It was easier than yesterday. She did not seem to be in nearly as much pain. She asked for pain medicine twice and we gave her a half dose each time. Keep praying for HAMA, it seems to be working. Morgan did get into a bad mood spell about 30 minutes before it was time to leave clinic. She was not really complaining of being in pain, but she was just out of sorts a bit. She kept asking me all these questions and then would get really bent out of shape when I could not answer them correctly. For example, at one point she asked me why I had a certain expression on my face. She would not accept any of the million answers I gave her. The truth was that I did not know and was not even aware of what my facial expression was at that particular moment. I gave her everything from I am hungry, to my head hurts, to the nurse made me mad. None of that was good enough for her. When I finally gave her an answer that she liked she told me that I could not answer her questions with my legs crossed. As you can tell, it was very fun dealing with her this afternoon.
Getting her out of clinic was fairly easy. Her rule for leaving was that she had to be completely covered by a blanket. That was easy enough. I covered her from head to toe with a hospital blanket and off we went. We forgot to bring the beloved "blue blankie" with us this time in our haste to get out of the house Sunday morning. That is probably for the best though because blue blankie is starting to show some wear and tear and is becoming quite thread bare. I am not sure how many more trips to New York blue blankie can withstand.
We found out today that Morgan is entitled to one more 3F8 treatment if she does not get HAMA this time. I am relieved by this because I want her to have one more opportunity to get HAMA if she does not get it this time. However, Latisha, Morgan's 3F8 nurse, seems really confident that Morgan will get HAMA this time. I hope she is right, but at least I know now if she doesn't she will have one more chance to get it.
The dates for Morgan’s next set of scans have been set for February. She will have her MIBG scan and bone marrow biopsies/aspirates on February 17 and a CT scan on February 18. We are doing the scans at home again. My friend, Heather, is once again putting together for a prayer vigil for Morgan and the rest of our family during this stressful time. If you are interested in signing up for a half hour slot of time on these two days, please email her at HMcLeod@BBandT.com. Heather is days away from having a baby so you may want to email her as quickly as possible to help her get this thing lined up. She did promise me that she would not have the baby until I get home from NY, but this is a promise that she may not be able to keep.
Prayer Requests:
1) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease.
3) Pray for the Lord to protect us while we are in NY and to make Morgan’s treatments effective.
4) Ask the Lord to bless Holden during our time of separation.
5) Ask the Lord to never again allow cancer to grow in Morgan’s body.
6) Please don't forget about all the other Neuroblastoma Warriors.
7) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Tuesday, January 25, 2005
Hello Friends,
I am writing this update in a much more rested state of mine than I was yesterday. Yesterday turned out to be an okay day. Just as I finished typing in yesterday's info, my mom called me on my cell phone to tell me Morgan was in meltdown because the VCR was not working. I went upstairs to see what I could do. After about four phone calls to North Carolina to gather advice from Jerry, a trip to the front desk to acquire extra cable wires, and four different RM House volunteers/staff members coming in to take a look at the problem, the VCR was finally fixed. From that point on, Morgan was in a great mood.
Dinner was provided for us last night by Sara Lee. We enjoyed it and dined with Carter and his family. Morgan is quite fond of Carter. She even had to stop this morning on the way into clinic to get a cookie for him.
After dinner, we immediately returned to our room and started the "going to bed" process. We were all tucked in before 10:00 and none of us had any trouble drifting off to sleep.
Today's treatment was a lot like yesterday's. Morgan required the same amount of pain medication (one and a half doses). The pain seemed a little more intense simply because she was awake for the duration of this treatment. They are always easier if she can manage to sleep through them. It was not difficult to get her out of clinic today either. She was a little bossy and loud out on the street but that was mainly because she was trying to tell me things and I was having trouble hearing her due to the loud New York City streets.
She got a little more hateful after we got back into the room. It took her a good 20 minutes to get into a state where she could relax enough to lie down on the bed. She watched one or two videos and then she drifted off to sleep. She was sleeping when I left the room.
Today I was talking with Morgan's nurses and Dr. Kushner about Morgan's treatment protocol. They informed me that the protocol states that she will receive 12 treatments in a twenty-four month period. I was under the impression that she would have as many treatments as we could fit in in a twenty-four month period of time. They were going to discuss this at their weekly meeting today and will let me know if Morgan will receive another cycle. This was an interesting turn of events and means that this could be Morgan's last cycle of antibodies. While I am very ready for Morgan to be out of treatment, I also really wanted her to get HAMA during the course of this clinical trial. Please pray specifically that Morgan will receive HAMA on this cycle so that we don't even have to worry about there not being another cycle. There was no indication today that she has HAMA or that it is even close, so please remember this issue in your prayers.
The dates for Morgan’s next set of scans have been set for February. She will have her MIBG scan and bone marrow biopsies/aspirates on February 17 and a CT scan on February 18. We are doing the scans at home again. My friend, Heather, is once again putting together for a prayer vigil for Morgan and the rest of our family during this stressful time. If you are interested in signing up for a half hour slot of time on these two days, please email her at HMcLeod@BBandT.com. Heather is days away from having a baby so you may want to email her as quickly as possible to help her get this thing lined up. She did promise me that she would not have the baby until I get home from NY, but this is a promise that she may not be able to keep.
Prayer Requests:
1) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease.
3) Pray for the Lord to protect us while we are in NY and to make Morgan’s treatments effective.
4) Ask the Lord to bless Holden during our time of separation.
5) Ask the Lord to never again allow cancer to grow in Morgan’s body.
6) Please don't forget about all the other Neuroblastoma Warriors.
7) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Monday, January 24, 2005
Hello Friends,
Greetings from New York City! Yes, that is right -- we made it. The journey is a story in itself. We were supposed to fly out of Greensboro at 12:40 yesterday afternoon. Around 8:00, we learned that our flight had been cancelled. I tried to get ahold of Delta and Jerry and I were trying to decide what we should do. The plan we came up with was for Jerry to drive Morgan and me and for my mom to fly up on the next available flight. At 8:30, I am walking around the house with a towel around my head and my bathrobe on and the kids are still in their pajamas. I hear someone frantically ringing my doorbell. As soon as I open the door, Mom comes in and tells me that she has made us a reservation on the Amtrack. The catch is that we have to be in Raleigh, at least a two hour drive, before the train leaves at 11:15. It seems impossible to me, but I am thinking that it is worth a shot since Raleigh is pretty much on the way to New York. By 9:00, we were all ready to go and Holden had been dropped off at my parent's house to stay with my dad. There were very few people on the road and by some miracle we made it to the Amtrack station in Raleigh before the train even pulled into the station.
We were very much relieved to be on our way to New York so we sat back to enjoy the ride. It was an uneventful trip at Morgan seemed to be enjoying the new experience. We coasted through eastern North Carolina and made our way up the east coast. Due to track conditions, by the time we reached Newark we were delayed by 40 minutes. We fully expected to arrive at Penn Station around 10:00. As soon as we pull out of the station in Newark, the lights go off on the train and we come to a complete stop. Then we started going backwards. We backed all the way up into the Newark station. It turns out that a train ahead of us has stalled and there is nowhere for us to go until the train is moved. So we sit on the train. Fortunately, by this time Morgan is sleeping soundly. We had to sit at the station for 3 hours and 20 minutes before we were able to get going again. Therefore, the last 19 miles of our journey took over 3 hours to complete.
We pulled into Penn Station a few minutes after 1:00 this morning. After waiting for luggage and finding a porter to help us with the luggage it was close to 1:30 by the time we got out on the street to find a car. The car I called for either never showed up or gave up on us and took other passengers. The cab stand line at Penn was huge and there were very few cabs stopping. I have never been as cold in my life as I was last night (early this morning) in our quest to find a car. Our porter was a super nice guy and he told us he was not leaving us until we were inside of a car. We finally found a car that agreed to take us to the Ronald McDonald House. The driver raised the hood and the porter loaded our bags for us. Imagine our surprise when we discovered that the latch on the trunk was frozen and the trunk would not close. We drove all the way to the Upper East Side with our trunk bobbing up and down.
We finally made it to the RM House and fortunately for Carter's father was standing out front. Carter is a fellow NB Warrior from Pennsylvania and Morgan's good buddy. Howard helped us get our bags into the house and we finally made it to our room around 2:30. By 3:00, we were all sleeping soundly and certainly not ready for the alarm clock to go off this morning at 6:00.
Most of the staff at clinic seemed fairly surprised that we made it in. They were expected this blizzard to delay our travels. Boy did we surprise them. Treatment today took a long time, but Monday's always do. Morgan was checked out by the nurse practioner before treatment could start. She slept through most of treatment since she was so exhausted from the adventures of the previous night and early morning. She woke up twice and asked for pain medicine. She was actually given one and a half doses. It was very easy to get her to leave clinic and we made it back to the RM House with no drama whatsoever. She is now in the room coloring and watching a DVD. She is a bit moody, but then again so am I after getting three hours of sleep last night.
I am going to go try to take a nap now. Catching up on my sleep seems like a really good idea. Thanks to all of you who prayed that we would make it to NY safely. God got us here that is all that matters. It was just another one of my traveling stories that I have to tell now. Through it all, Morgan was a real trooper and never really complained (that much).
The dates for Morgan’s next set of scans have been set for February. She will have her MIBG scan and bone marrow biopsies/aspirates on February 17 and a CT scan on February 18. We are doing the scans at home again. My friend, Heather, is once again putting together for a prayer vigil for Morgan and the rest of our family during this stressful time. If you are interested in signing up for a half hour slot of time on these two days, please email her at HMcLeod@BBandT.com. Heather is days away from having a baby so you may want to email her as quickly as possible to help her get this thing lined up. She did promise me that she would not have the baby until I get home from NY, but this is a promise that she may not be able to keep.
Prayer Requests:
1) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease.
3) Pray for the Lord to protect us while we are in NY and to make Morgan’s treatments effective.
4) Ask the Lord to bless Holden during our time of separation.
5) Ask the Lord to never again allow cancer to grow in Morgan’s body.
6) Please don't forget about all the other Neuroblastoma Warriors.
7) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Saturday, January 22, 2005
Hello Friends,
This has been a very worrisome week for me. The first part of the week, I was worried about Morgan’s health. The second part of the week I was worried about the weather and how we were going to get to New York on Sunday. Morgan’s health seems to have improved and I am finally convinced that it was just a cold. The weather is another story. I am still a bit concerned about how we are going to get to New York since the city (and most of the Northeast) is getting slammed with snow right now. I guess tomorrow I will know more about this issue.
We also had something very special happen to our family this week. A few weeks ago, a lady who learned of Morgan’s story through Caringbridge and our friends at Brenner Children’s Hospital notified me. Her son’s sixth birthday was approaching and he had a desire to help someone rather than receive gifts for his birthday. What a special young man! He asked that people contribute to Morgan’s fund rather than bring him gifts. We were actually supposed to attend his party but could not because Morgan got sick last weekend. Our family was truly touched and blessed by these donations. It will certainly be helpful with another trip to New York right around the corner. Our family truly thanks Tyler Lamberth and the rest of his family for their kindness.
Since Monday was a holiday, all four of us were home from work and school. Morgan had an appointment to have her teeth cleaned (just what all of us like doing on our day’s off). I was very proud of Morgan on Monday. When they called her name she stood up and told me that there was no need for me to go back with her. She has come a long way since she used to have to be strapped to a board and have her mouth held open with some type of dental device. All things considered, her teeth are in pretty good condition. She has had one tiny cavity that they have been watching since her very first “post-transplant” dentist appointment. The dentist finally decided to fill it. On Tuesday, Morgan knew something was up when I took her back to the office again. She was not quite so eager to go back this time. Morgan’s dentist has a policy that parents stay in the waiting room during the filling of cavities. Morgan did not like this policy. She went back with a few tears, but no screaming or loud crying. It was just those sad little tears that quietly run down a child’s face and break a mother’s heart. The procedure took less than an hour and when I saw Morgan she still had tears in her eyes. Fortunately, they told me that the nitrous oxide knocked her out and she slept through most of the procedure. She informed me that she did not like what they did to her and they made her mouth feel funny. She was not in much pain, and quickly seemed to be over the whole incident.
I had a doctor’s appointment on Tuesday. Everything is progressing nicely. I have gained three pounds and all urine and blood tests came back within the normal range. The nurse was able to find the baby’s heartbeat immediately. It was beating at a nice rate of 162. I will go back in three weeks for another routine appointment and some blood tests.
Wednesday, Morgan was thoroughly exhausted after school and therapy. It was obvious looking at her that she did not feel well. Her temperature held pretty steady in the low-grade fever range. By Friday morning, I was convinced that she needed to make a return trip to the doctor. So many people we know have had pneumonia lately. Morgan had a bad cough at the time, so I wanted to rule that out. Jerry took Morgan to the doctor where they did a complete battery of tests. Her chest x-ray was normal, the strep test was normal, and her urine tests were normal. By Friday, she seemed to be feeling better even though she still has a cough and runny nose.
Friday Morgan was excited because she had a two-hour delay from school. There was absolutely no reason for it because all we got here was rain, but she was happy nonetheless. Due to Martin Luther King, Jr. Day, doctor’s appointments, dentist’s appointments, occupational therapy appointment, and bad weather delays, Morgan has not attended school for a full day since last Thursday. And of course, she will miss the next two weeks due to treatment in New York.
Today we are relaxing at home. I have all of our bags packed and am hoping that we will get on a plane tomorrow. There is freezing rain and snow in the forecast here, but I honestly am not sure if it is doing anything or not. I have been so absorbed by New York’s forecast that I am paying little attention to the local forecast. I am hoping that things clear up enough for us to make it to the city tomorrow. I am not sure what will happen if the weather makes it impossible for us to get up there on Sunday. I am thinking that it should not matter too much since we have missed days in the past for holidays. Plus, Morgan is so far along in treatment that it should not hurt her to miss one day. However, I have talked to the nurse’s before about how strict the rules are when you are following an FDA protocol for a clinical trial. I hope they don’t tell me that since we have missed one day, treatment will be delayed for another week. I am ready to do it and get it behind us. I will certainly update everyone about our traveling situation.
It turns out that Holden’s new mattress is not making a big difference in our sleeping situation. He has managed to find his way into our bed every night since that first night with his new mattress. Oh well, I thought it was a good idea.
The dates for Morgan’s next set of scans have been set for February. She will have her MIBG scan and bone marrow biopsies/aspirates on February 17 and a CT scan on February 18. We are doing the scans at home again. My friend, Heather, is once again putting together for a prayer vigil for Morgan and the rest of our family during this stressful time. If you are interested in signing up for a half hour slot of time on these two days, please email her at HMcLeod@BBandT.com. Heather is days away from having a baby so you may want to email her as quickly as possible to help her get this thing lined up. She did promise me that she would not have the baby until I get home from NY, but this is a promise that she may not be able to keep.
Prayer Requests:
1) Pray that the Lord will provide us with traveling mercies and allow us to get to NY in time for Morgan to receive treatment.
2) Ask that all of Morgan’s upcoming scans and tests show no evidence of disease.
3) Pray for the Lord to protect us while we are in NY and to make Morgan’s treatments effective.
4) Ask the Lord to bless Holden during our time of separation.
5) Ask the Lord to never again allow cancer to grow in Morgan’s body.
6) Please don't forget about all the other Neuroblastoma Warriors.
7) Pray that Morgan will get HAMA at some point during her course of treatment.
FUNDRAISING INFORMATION
COOKBOOKS ARE STILL AVAILABLE. IF YOU ARE INTERESTED IN PURCHASING ONE PLEASE EMAIL ME. ALL PROCEEDS GO TO HELPING PAY FOR MORGAN’S MEDICAL TREATMENTS IN NEW YORK WHICH ARE NOT COVERED BY INSURANCE.
God Bless,
Allison
Saturday, January 15, 2005
Hello Friends,
This has not been such a quiet week. The first part of it was, but Thursday and Friday have thrown us for a loop. Yesterday, Morgan woke up and was complaining about going to school. She has not done this in a while so I was a bit concerned. Then, I noticed that she felt warm. Of course, I pulled out my thermometer and found that she had of fever of 99.7. Not too high, but still a bit high. My first thought was that the antibiotic did not totally clear up her ear infection so I took her back to her pediatrician yesterday. Of course, when we got there her temperature was totally back to normal. He looked at her ears and declared that they looked perfect (not really what I wanted to hear). Okay, so we are dealing with an unexplained fever that comes and goes – a bit scary.
Morgan acted like she felt fine and wanted to go back to school. I took her, but I did not work. I just knew that at some point I would receive a phone call telling me to come pick her up and I did not want to be on the other side of the county when that happened. When we got to school, I explained what was going on to her teacher and she told me that lots of the kids in the class had been out recently due to running fevers. That made me feel somewhat better. I went to have lunch with Morgan and again she felt warm when I got there, but I did not have a thermometer so I can only assume that she had a fever. She acted like she was feeling good so I let her stay at school and she made it through the day. She seemed fine when she got home and played very hard. She even rode her scooter around the block, which would totally wear me out.
This morning she woke up at 5:00 and was burning up. Her temperature was 103.1. I gave her Tylenol and told her she could go back to sleep because she did not have school today. She said she was ready to get up. She woke Holden up and they stormed the house while Jerry and I tried to finish sleeping. Again, there was no indication that she felt bad. When I had listened to all the ripping and roaring I could stand, I got out of bed to see what was going on. Thankfully, the house was still in a fairly good condition. Morgan’s fever had come down to 100.0. I called her oncologist just to see if they wanted to culture her port since a fever is an indication of a line infection. Morgan has had her port for well over two years and never had an infection so I did not think this was likely, but I still wanted the experts to make the decision. Thankfully, Dr. Wofford decided that since she has not been accessed since December 9 and she is acting fine, we did not have to take her in to the emergency department to have this done.
So, we have cancelled all plans for today and are just planning on laying low. We will give Morgan lots of fluids and allow her to relax (so far relaxing has not been on her agenda). If she starts feeling worse, we will have to take her in and get a line culture. Of course, I am sure that I will feel Morgan’s head a million times and take her temperature a thousand times.
As for the rest of the week, things were pretty normal. Morgan did not have good days at school on Tuesday or Wednesday. She was not listening very well and lacked motivation to get her work done. Looking back on it, she probably did not feel very good. Friday she had a great day.
Holden has a habit of getting into bed with us every single night. Most nights, I do not even notice it until I wake up and find him beside me. Well, at some point this week I was changing the sheets on his bed and realized what bad shape his mattress is in. Holden has a racecar toddler bed and he uses a crib-sized mattress. This mattress is five years old because we got it when Morgan was born. It was probably a good mattress for a small infant, but for a child who weighs almost 40 pounds I don’t think it was very comfortable. Last night, we bought him a much better mattress. And, it may be coincidence but last night was the first night I can remember in a long time that he has spent the whole night in his bed. So far, it was worth the $40 we spent on a new mattress. We shall see what tonight holds.
Prayer Requests:
1) Pray that Morgan’s fever is a result of a simple virus that will run its course in a few days. Ask that this not be a symptom of cancer returning to her body.
2) Ask the Lord to never again allow cancer to grow in Morgan’s body.
3) Please don't forget about all the other Neuroblastoma Warriors.
4) Pray that Morgan will get HAMA at some point during her course of treatment.
God Bless,
Allison
I HAVE SOME COOKBOOKS HERE. IF YOU ARE INTERESTED, PLEASE LET ME KNOW. THE LAST COOKBOOKS THAT WERE DONE SOLD PRETTY QUICKLY.
Saturday, January 8, 2005
Hello Friends,
ANNOUNCEMENT: JERRY’S AWESOME CO-WORKERS HAVE PUT TOGETHER ANOTHER AMAZING COOKBOOK FOR MORGAN. THEy JUST BECAME AVAILABLE THIS WEEK. IF YOU WANT INFORMATION ON GETTING ONE, PLEASE EMAIL ME.
This was the week that we all returned to our normal routines. It has been somewhat tiring. I went back on work on Monday because we had teacher workdays. Holden went back on Monday too. Morgan’s school did not start until Wednesday so she had two full days of hanging out with Grandma, Pawpaw, and her cousin, Smith. In order to be fair to Holden, he got to spend some private time with Grandma and Pawpaw this week too. He spent the night with them Tuesday and stayed there Wednesday.
It has been a quiet week for the most part. Morgan has almost finished with her antibiotics and the ear infection seems to have run its course. Morgan and Holden still have slight runny noses and coughs, but they both act like they are feeling fine.
I am mentally preparing myself for our next trip to New York. Mental preparation involves thinking about the things we will need to take, praying that the weather will be good on our travel days, and loving on Holden as much as I can since I will be separated from him for two weeks. We will be flying out of here two weeks from tomorrow. I thank God everyday that He has made this treatment available to Morgan. I adamantly believe that God used Dr. Kushner and the rest of the team at MSKCC to remove all traces of neuroblastoma from Morgan’s body. I can’t imagine where we would be today if we had decided not to pursue this treatment. We would not have known that Morgan still had cancer in her bone marrow after her transplant. There was honestly a time right after transplant that we were sick and tired of treatment. We did not want anymore hospital experiences. We were tired of seeing Morgan poked and prodded and tired of our family being separated. We prayed for the Lord to guide us in the right direction. And as hard as it was in April 2003 when we learned that the neuroblastoma persisted through transplant, we believe that was God’s way of telling us that 3F8 was a necessary treatment for Morgan.
I think the highlight of our week was today. Morgan and Holden went to our friend, Madison’s, birthday party. She had it at the new Children’s Museum in Winston-Salem. It was fabulous. The kids played nonstop from the time we arrived until we left. And, it was a struggle getting them out the door. Happy Birthday Princess Madison!
Jerry had another appointment to give platelets today. I would love to be able to give too, but they don’t want platelets from pregnant people. Morgan is in her room playing with Barbie dolls. I can hear her singing “You’re Never Fully Dressed Without a Smile”. Of course, that makes me smile. From the time Morgan learned to talk, she loved to sing. My mom told me once that it was obvious Morgan was a happy child because she sang so much. Her singing was a sign to me that she was content with her world. Of course, there was a year or so of Morgan’s life when the singing stopped. That was understandable because her life was full of so much pain. Well, she now singing again – Praise be to God!
My dear little Holden is sitting here playing a painting game on the computer. Of course, he is making this update take much longer to type because I have to get up and see each and every one of his creations. Just turning my head and looking at them is not good enough for my little Picasso. I am thankful for these moments and his desire to take me by the hand to see his masterpieces. All too soon, he will be in middle school and will be embarrassed to be seen with me in public. I work in a middle school; I know these things.
The baby and I are doing just fine. I will be 12 weeks tomorrow and for some strange reason I am starting to feel sicker and sicker. This kind of scares me because I remember being sick with Holden for the entire nine months. We go back to the doctor on January 18 and hopefully we will hear the heartbeat at that appointment.
Once again, thanks for the support that you have given our family. We do not know where we would be without the love and prayers of all of you. Nothing you have done for us has gone unnoticed. We thank God for the love of our family, friends, and people who were complete strangers to us before this journey began.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
God Bless,
Allison
Saturday, January 1, 2005
NEW PICTURES HAVE BEEN ADDED TO PHOTO ALBUM
Hello Friends,
Happy New Year to you all! 2005 wow. Time sure does pass by quickly. I remember hearing those words from adults when I was a child and not really ever believing it. The years pass by now in the blink of an eye.
I glanced back at my last journal entry for 2003. I wrote “What do we desire for 2004? We want it to be an even better year than 2003, filled with even more happy memories. We want God to continue to protect Morgan from this foul disease and never again allow cancerous cells to grow in her body. We want every scan and test she has to come back showing no evidence of disease. Basically, we want to be a normal family that does not worry about cancer all the time.” All in all, I think 2004 was a very good year for our family that was filled with lots of happy memories. The Lord protected Morgan during 2004 and every scan she had was good. Do we worry about cancer all the time? Well no, we don’t worry about it all the time. I am sure we still worry about it more than the average family, but it is not on our minds like it used to be. I admit that I still get frazzled at scan time and I panic when Morgan complains of anything hurting. But, neuroblastoma is not the first thing on my mind each morning when I wake up and the last thing that crosses my mind when I go to bed each night. Normal is a completely relative term and I think our family is very blessed to be where we are at this moment. We probably aren’t normal, but then again we probably never were.
There are way too many families who are facing this New Year feeling the absence of a child they love. The last few months have been particularly hard in the world of neuroblastoma. I have often said that one of the hardest parts of this journey has been meeting and saying goodbye to some really wonderful kids. Since November, at least three children who were diagnosed within a month of Morgan have become angels. I am so very thankful that Morgan is doing well and I know that God has a plan for her and the rest of our family. Please say a prayer for the families of Alex, Carl, Robyn, Sophia, and Trey (all of whom were neuroblastoma warriors); Justin (osteosarcoma); Jordan
(MPS disorder); and the countless other children who faced cancer or some other life threatening illness.
The last week of the year was fairly laid back for us. Of course, I was off work and Morgan was out of school. Jerry had Monday off. Holden went to school only on Wednesday because that was the day that Morgan had occupational therapy. On Wednesday evening, Morgan informed us that she had an earache and she had a fever of 100.7. I couldn’t help but thinking of the days when a fever that high meant a hospital admission for Morgan. Her complaints were not surprising to me at all since her nose has been running since the Sunday before Christmas and she has had a cough. On Thursday, we went to visit her pediatrician and an ear infection was confirmed. She has been taking amoxicillian ever since. It is funny that now I take her to the doctor hoping he will look into her ears and say, “yes, that is an infection”. An unexplained fever and complaint of pain would be much harder to deal with than a simple ear infection.
Jerry was also off work yesterday and I put him to work. I have wanted to paint Holden’s room for the last year. I figured it was time to take the Winnie the Pooh border and give him a big boy room. Conveniently, I decided the perfect time for painting was during my pregnancy so I just could not help out. Holden’s room is now painted in perfect big boy fashion. Jerry spent the whole day working on it, but it was all worth it when Holden walked in and said, “Wow, I love my room”. There is still some more work to do and I am confident Jerry will do a great job under my direction.
We rang in the New Year very quietly. We visited with our friends the McLeods last night and were home by 10:30. As 2005 rolled in, Jerry was in our bedroom watching the new DVD we got him for Christmas (the first season of Magnum PI), I was on the couch watching one of my favorite shows, City Confidential. The kids were both tucked into their beds. Today we celebrated with a traditional Southern New Year’s Day feast at my parent’s house. We had pork chops, black eyed peas, collard green, and of course, my father’s cornbread. That was good eating and since I am pregnant I did not have to say a single time that I was going to start watching what I eat and try to lose some weight. I have decided that I will lose some weight after the baby is born, but that is not until July!
The weather here in North Carolina has been beautiful the last two days. It has been in the mid 50’s and sunny. The kids and I spent a lot of time outside yesterday while Jerry was painting. Today after we got home from Grandma and Pawpaw’s we stayed outside for several hours playing with the kids. Tomorrow is supposed to be another beautiful day. I am sure this is just a bad tease for us though and old man winter will be returning soon. Until then, I will enjoy this great weather.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
God Bless,
Allison
Saturday, December 25, 2004
Hello Friends,
Merry Christmas! We hope that you were able to enjoy lots of great family time together. The last two days have been terrific for us. Last night, we celebrated with Jerry’s side of the family. We gathered at Uncle Dane and Aunt Debbie’s house and just enjoyed being together. I recall that two years ago Morgan’s counts were too low and she was not able to attend our annual Christmas Eve gathering. To see her enjoying herself last night with Holden and her cousin, Seth, it was difficult to think that she had ever been sick. She is so full of life and happiness.
This is the first Christmas ever that Morgan has really been “excited” about Santa coming. Last night, she went downstairs with her Daddy and left him a plate of cookies and a glass of milk. Then she went to her bed and restlessly tried to go to sleep thinking of when Santa was going to arrive. This morning, we did not have to ask her twice to wake up. Morgan and Holden went downstairs and found that Santa must have found their behavior favorable because he was very kind to them. I never doubted for a moment that he would be.
We had breakfast this morning with my family. Again, Morgan was very happy to be with her family. She was so sweet at breakfast. She and Pawpaw had a nice conversation about the book that she is currently reading. She told him all about what Dick and Jane are doing. She even promised to bring the book over and read it to him sometime. Morgan was a lot less rambunctious than her cousin and her little brother. I guess that is the girl coming out in her.
Later, we headed out to visit with Grandma Byrd. Morgan and Holden had a nice time there too, but then again they always do. By the time we were ready to leave, both kids were exhausted after a very active day. However, by the time we got home they were refreshed and ready to get to it with their new toys. Right now, Morgan is watching Bella Dancerealla and learning some new dance moves. Holden is on the Island of Sodor working with Thomas the Tank Engine and friends. He is doing some major moving with Cranky the Crane. Holden’s attention has not wavered from Cranky much since he opened it this morning.
We have been blessed this Christmas season. In fact, I feel God’s blessing each time I look at my children. I often wondered if life would ever be this good again. It is actually better. However, there is still much sadness in the world caused by this beast called neuroblastoma. I know two families who have spent the last few days planning funerals for their children because the cancer refused to leave these children’s bodies. Trey became and angel on December 22. Trey was diagnosed two months after Morgan. He was treated at Duke and I began corresponding with his family while Morgan was in transplant. He also received antibodies at MSKCC. Sophia became an angel on December 23. We met Sophia, her mother, and sister in NY. Sophia and Morgan were roommates once during a cycle of antibodies. She was diagnosed within weeks of Morgan. It is hard to lose a child at any time of year, but Christmas is supposed to be the most wonderful time of the year. These kids should be exhausted from a happy day of celebrating today, not being eulogized. We have got to find a cure for this horrible disease. My heart goes out to both of these families.
Morgan decided to send me into orbit this week. On Tuesday, we pulled up into the parking lot of her school. She informed me that she could not walk into the school because her legs hurt. This was her original cancer symptom so it really freaked me out. I was carrying in gifts for her teachers so she had to walk. She did not limp or anything, but she did walk very very slow. I emailed her teachers as soon as I got to work and asked them to watch her pretty closely. They later told me that she did move rather slowly all day, but she never complained of hurting again. They also told me that she acted tired all week. But, she does have a cold so that may have something to do with it. I talked to her occupational therapist about it on Wednesday and she said Morgan worked really hard for the entire hour and never showed any signs of fatigue or pain. That was enough to put my worries to rest. Plus, watching her last night and today I am confident that she is okay.
Thursday we had a great day. Morgan, Holden and I stayed home and baked cookies. The kids lost interest after about an hour. But, I worked on them for about four hours. They kids enjoyed eating them long after they stopped helping to bake them.
We have one more bit of news to share with everyone. Our family is growing. No we did not get a dog for Christmas. We are going to have another baby. Morgan and Holden’s little brother or sister will arrive in July. We are all very excited. It has been quite a while since dealing with the medical community was a joyous event for our family. I had my first appointment on Monday and they did an ultrasound. We saw our little bean and he or she appeared to be perfect. Morgan seems happy about the news. Holden does not seem to have a clue. When asked if she wants a brother or sister, Morgan replies “both”. It is going to definitely be a lifestyle adjustment for us. I am not going to work next year. I hope to become more domesticated between now and then.
I hope the last week of 2004 is wonderful for each of you. Thanks so much for checking in with us and remember our family in prayer.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
God Bless,
Allison
Saturday, December 18, 2004
Hello Friends,
Well, here we are one week away from Christmas. I am still shocked by the fact that this year is almost over. I could swear that we just celebrated Christmas 2003 a few months ago.
I guess the big question on everyone’s mind is whether or not Morgan will require another cycle of antibodies. The answer to that is – yes she will. I won’t say that we are excited about this, but I won’t say that we are disappointed either. I can name numerous families who would love to be in the same place our family is in on December 18, 2004. I think it would be insulting to them for me to moan and groan about my daughter receiving another cycle of medicines that we feel is saving her life. We are thankful and blessed beyond compare.
We will be leaving on Sunday, January 23 to start Morgan’s twelfth cycle of antibodies. Regardless of what happens with HAMA, Morgan will definitely be off of treatment in April 2005. This will mark the two-year anniversary of her starting 3F8. I guess what concerns me the most is what happens if she goes all the way through treatment and does not get HAMA. With two more cycles in her future, we are praying that eventually Morgan will get HAMA. Prayer is a powerful tool, we are certainly aware of that.
This week, Morgan received three more shots in the quest for being re-immunized. She only has six more shots to go and she will be totally up to date. She is due for the next three in February. This is so hard for Morgan. She knows what is coming as soon as I mention that it is time to go to the doctor’s office. She knows the difference between “clinic” and “doctor’s office”. She is brave though, but it still upsets her.
Morgan had an excellent week at school this week. The teacher commented to me that Morgan seems like a different little girl than she was at the first of the year. She seems happier in school and her attention span is a lot better. Some of this is probably due to the maturation process that takes place in all kindergarteners. But, I attribute some of it to the fact that Morgan is no longer in after-school care. I changed my hours at work so that I could work four hours a day and work more often. I was working complete days and taking more days off. I just don’t think Morgan has the stamina yet to endure the additional hour or so that she was spending at school. My new schedule is helping her out so much. Now that I know I will be taking two weeks off to go back to NY, I am certain that there will some full days I need to work simply to get all of my time in. I am sure we will be able to work something out (hint, hint Grandma and Paw-Paw).
Last night, we attended my grandmother’s 80th birthday party. That was certainly a special event. Helen Byrd (or Grandma Byrd as she is known to us) is the only great-grandparent that my kids have left. She is such a special person. Her love of the Lord and her family is evident to all who have met her. She has five children, seven grandchildren, and twelve great-grandchildren. Happy Birthday Grandma! We all love you very much.
Holden is still working on potty training. He now knows that Santa is really interested in his progress. That seems to be helping out somewhat. Santa calls to get daily reports on his progress. Santa really wants to bring Holden “Cranky the Crane” but just isn’t sure if a little boy who is not potty trained is ready to be the owner of a crane. This may be a dirty tactic, but nothing else is working for us. This is the most interested he has been in any method we have tried. We started this adventure in March and I am ready to get it behind us.
Today is a lazy, do nothing kind of day of the kids and myself. It is a blessing to be able to have such a day during this busy time of year. Spiderman (AKA Holden) and Princess Jasmine (AKA Morgan) are ridding my home of various bad guys. I am very thankful to have a bad guy free home, since I am trying to get laundry done. Jerry has gone to donate platelets. He acted like he didn’t want to go, but sitting in a chair, watching TV and not being bothered for two hours does not seem like such a bad prospect to me.
By the way, our buddy Ethan, whom I mentioned in the last update, did not relapse as far as we know. He must have had some type of virus because he was released from the hospital early this week. Praise God!
Please pray for another friend. Trey has neuroblastoma and was treated at Duke and MSKCC. He has just been placed under the care of hospice. Please pray for Trey and his entire family. Ask God for a miracle and to give this family strength during this difficult time.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan will get HAMA at some point during her course of treatment.
God Bless,
Allison
Sunday, December 12, 2004
Hello Friends,
We have been busy getting ready for Christmas. I think we are ready, but I am sure some kind of surprise will pop up at the last moment. The past week was rather uneventful, which is always a good thing.
On Sunday, our church had a Birthday Party for Jesus. This is an annual event, but this was the first year that our family was able to attend. Morgan had the honor of blowing out the candles on the birthday cake. Kim Hawkins, the person responsible for putting this affair together, introduced Morgan and told her story. We rejoiced in the work that the Lord has done in her life. I got a little teary eyed, and so did many other people. I thank God that I have the privilege of witnessing His hand in my life each and every day. Morgan is a testimony to His healing power and I am so grateful for all that He has done for my family.
Monday was a big night at karate for the kids. They had their first belt test. They both did an outstanding job and now have blue striped belts rather than plain white belts.
On Thursday, Morgan had a clinic visit to draw blood to send to NY. It was a pleasant visit in that Morgan was able to spend most of our waiting time doing arts and crafts, which she loves. Plus, we ran into some old friends. We saw Holden Hartzog and his mother. Holden was diagnosed with ALL (leukemia) a few months after Morgan’s diagnosis. Of course, we were immediately drawn to this family because our sons share the same name, and Holden is really not that common of a name. Holden H’s birthday is also on July 25, but he is one year younger than Morgan. Holden is doing great and will be finished with treatment this spring. Praise God! We also ran into our buddy Ethan (well actually we just saw his mom, Kristen, because Ethan had a fever). Ethan needs some prayers. His family goes to our church. He also has ALL. Pray that Ethan’s counts will recover quickly and he will be discharged from the hospital shortly. After we got home from clinic, I got an email from the church stating that we need to pray for Ethan because there is some speculation that he may have relapsed and the doctors were going to test for that on Friday. Please pray that this is not the case.
Saturday was a big day for Morgan. Her dance group marched in the Advance Christmas Parade in the big city of Advance, NC. The younger girls got to ride on a float and Morgan was smiling from ear to ear as she passed us by. Holden enjoyed the parade too because he was able to hang out with his cousin, Smith, and eat candy nonstop. He was pinging off the walls from his sugar high, but he crashed pretty hard last night.
As I type this update, Morgan is at a birthday party for a little girl in our neighborhood – being absolutely, positively normal. God is good – all the time!
We will find out on Wednesday if Morgan is HAMA positive or negative. I will certainly let everyone know the results in my next update. If she is negative, we will return to NY for the next cycle of antibodies on January 24. If she is positive, she is finished with treatment (hopefully forever).
Holden is doing well. We still have not totally crossed that potty training bridge, but he is making progress (very slow progress, but progress nonetheless).
As always, thanks for checking in with us and prayerfully supporting our family for the last 29 months.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray that our buddy, Ethan, has not relapsed and he will be discharged from the hospital very soon.
God Bless,
Allison
Saturday, December 4, 2004
Hello Friends,
This has not been the best week. We are all fine, but emotionally it has been a tough week.. I found out on Sunday that another NB Warrior became an angel. Carl was diagnosed 18 days after Morgan. His mother and I started communicating when Morgan was in transplant. We met them on several occasions in NY while Carl and Morgan were doing antibodies together. It is my habit to look back in the previous journal entries to see what we were doing a year ago. I looked back and found that it was just a year ago that Carl’s family found out that he had relapsed. They are a fine family and my heart breaks for them.
The next day, I received an email from the uncle of another NB warrior who became an angel. Eric's uncle emailed me on a regular basis to update me on his progress. Eric was close in age to Holden and much too young to have endured what he lived through. Eric’s journey was very difficult and he had tremendous pain. Now he is pain free, but a family has lost a precious son. May God bless both of these families.
That brings us to Tuesday. My brother called me to tell me that a kindergartener at his school had just been diagnosed with neuroblastoma. I cannot believe that another local child has this horrible disease. I thought it was supposed to be a rare disease, but I can name numerous kids who live within a 50-mile range who have fought or are fighting this monster. Thinking of this family brought to mind all of the sadness that we endured during those first few days of Morgan’s diagnosis. Please pray for Brandon and his family. I hope to meet them someday and hopefully help them if I can. I have said many times how grateful we were to the Cain Family. They contacted us almost immediately after Morgan was diagnosed and helped us in so many ways. It has always been a goal of mine to be able to do that for other families.
Morgan had a pretty good week at school. Her behavior was wonderful. She got a green card every day and I am so proud of her. Wednesday was a hard day for her. Morgan is pretty sensitive. She gets upset when someone tells on her. The kids at her table picked up on this and started telling her they were going to tell on her for every little thing she did (even though she wasn’t doing anything wrong). By the time the teacher picked up on this Morgan was in tears. The other children were disciplined and Morgan came home happy. I have to admit that this made me very sad. I am just so ready for something to be easy for Morgan. She has been through so much and doesn’t need any additional grief. Kids will be kids; I understand this. I just want Morgan to be happy at school. I think she deserves some happiness. I think for the most part, she is happy. But I will never stop worrying about her.
The highlight of the week was that Holden did not have any accidents at school all day on Friday. I have not mentioned it lately, but we are still working on potty training. When I got home from NY, I discovered that all of the progress that he had made had disappeared. It was like we were starting over at day 1. Remember, we have been doing this since March. I almost hate to type this for fear it will jinx us, but he may have turned a corner on Thursday night. He went to the bathroom on his own twice and then had a great day on Friday and so far has had no problems today. Oh, I hope this is a chapter of our lives that we can put behind us.
We have a busy weekend planned. Today we are going to see Disney on Ice with Heather and Madison. Tomorrow we are going to a Birthday Party for Jesus at church. The kids are excited about both of these events.
Morgan has a clinic visit on Thursday. We will draw her blood and mail it to NY for HAMA testing. We are ready for HAMA, but praying for God’s will.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) And please don't forget about all the other Neuroblastoma Warriors.
God Bless,
Allison
Saturday, November 27, 2004
NEW PHOTOS HAVE BEEN ADDED IN THE PHOTO ALBUM!
Hello Friends,
Home Sweet Home! We got home last night and all of us were very glad to arrive back in North Carolina. I think Morgan was the most excited of all. She talked non-stop from the time we arrived home until she finally fell asleep on the couch.
I hope that everyone had a great Thanksgiving. Ours was nice, but I would have rather been at home. Morgan had a ball at the Macy’s parade. We viewed it from a 7th story office building. Morgan sat by a window with Kenneth, her new friend, and watched the entire thing. I got a little bit bored, but Morgan certainly did not. Kenneth is also an NB patient who got antibodies the last two weeks. He is from Peach County, GA and just as cute as he can be. Jerry recorded the parade. We watched it last night. I immediately noticed that there was a lot going on that we were totally unaware of. We could not hear any of the music. North Carolina’s own American Idol, Fantasia, was there and we had no idea. High 5, the stars of one of Morgan and Holden’s favorite shows, performed and we totally missed it.
Another good thing about our trip to NY was that we finally got to meet Carter and his family. Morgan really liked Carter a lot. He is also absolutely adorable and his family is awesome. I have known them through Caringbridge for some time, but had never met them in person until this trip to NY.
Yesterday’s treatment went very well. I don’t think she had much pain. She asked for medicine and we gave her a half dose, but she never really acted like it was hurting her that much. We will send her blood off to NY in approximately two weeks to find out if she is HAMA positive or negative. If she is positive, we are finished with treatment. If she is negative, we return to NY to start cycle 12 of antibodies on January 24.
We were very blessed by a surprise yesterday. The varsity girl’s basketball team from West Forsyth High School brought us a turkey and lots of other yummy items. I hope someone affiliated with the team reads this so they will know how grateful we are. It was so nice to be able to come home from NY and not have to immediately run out to the grocery store and restock. Ladies, your timing was perfect and we are truly appreciative. West is currently our residential high school (though they are building a new one) and it is also the school my brother taught at before he became and assistant principal in another county. We are going to try and go watch the team play on Monday night.
I still have suitcases to unpack and I am getting ready to start on that. We are also going to try to put our Christmas tree up today. Beyond that, I plan on just relaxing and enjoying being with my family. Jerry said something about finishing up our Christmas shopping, but who has the energy for that?
It will probably be a week before I do another update. On Monday, I will return to work and Morgan will return to school. Our lives will restart that busy weekly routine. Life will be normal – and that is wonderful. God is good –all the time!
Prayer Requests:
1)Ask the Lord to never again allow cancer to grow in Morgan’s body.
2)And please don't forget about all the other Neuroblastoma Warriors.
God Bless,
Allison
Wednesday, November 24, 2004
Hello Friends,
Morgan remained in a pretty bad mood for most of the afternoon yesterday. Finally, about the time Mary Beth arrived she got happier. In fact, when Mary Beth and I went to dinner Mom and Dad took Morgan out to get their dinner. They said she behaved like the perfect little lady. Her bad attitude yesterday must have zapped all of her energy because she was asleep last night when I got back (around 8:30).
Today has been much better for all of us. Morgan woke up this morning in a great mood and has stayed that way for most of the day. Treatment today seemed to be a little worse than the last few days. She still made it through with only a half dose of dilaudid, but it was obvious she was hurting more. Plus, her face got really really red today. I do not think that she will get HAMA on this cycle. I think we will be making another trip back to MSKCC at the end of January.
This evening we are planning to go to see the big hot air balloons that are used in the Macy's Thanksgiving Day Parade be inflated. But it is rainy here and if the weather does not improve we will probably sit it out. Tomorrow we are getting up bright and early and going to the parade. The guests of the RM House have an office building from which to view the parade.
I hope that everyone has a happy Thanksgiving. I will probably not do an update tomorrow since there is nothing medical going on. For the last two years I have updated on the day before Thanksgiving and let everyone know about all the things for which I am thankful. Well, my story has not changed a lot. The Lord has brought Morgan so far in this journey. He is at work in our lives each and every day. I am so blessed. It will be hard being away from Jerry and Holden tomorrow, but the Lord has a plan and there is a reason why we are here. God is good -- all the time.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan's treatments will continue to be effective in ridding her body of this horrible disease forever.
4) Pray for Holden. It has to be hard for him with his Mommy, Sissy, Grandma, and Pawpaw all away.
God Bless,
Allison
Tuesday, November 23, 2004
Hello Friends,
Today has been a long day. Morgan woke up this morning with a very argumentative attitude. Of course, that was not made any better by the dilaudid that she needed during treatment. The actual treatment was much like the last few days. She only needed one dose of pain medicine to make it through. Her temperament was terrible. She has argued with me about absolutely everything since daylight. It has been a long time since she has created a scene walking up First Avenue, but she did so today. Now mind you, it was nothing like the scenes of old but it was still much worse than anything I have seen in awhile. Morgan has had to spend quite a bit of time in time-out this afternoon. I honestly do not think this is truly a result of all the drugs. I think it is more just a Morgan thing. Maybe she is sick of being here and is tired of treatment. Maybe she is frustrated about being away from home and wants to see her daddy and brother. Who knows? But, we are hoping and praying for a better day tomorrow.
Tonight I am having dinner with a friend, Mary Beth, who is in town on business. I think it will be good for everyone for us to have some separation time. It is at this point in the trip that being here always grinds upon our nerves just a little bit more. Going home is right around the corner but I just know that the next three days will drag by. My parents and Morgan are feeling it even worse because I did have the opportunity to go home for a few days.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan's treatments will continue to be effective in ridding her body of this horrible disease forever.
4) Pray for Holden. It has to be hard for him with his Mommy, Sissy, Grandma, and Pawpaw all away.
God Bless,
Allison
Monday, November 22, 2004
Hello Friends,
This will be a quick entry because the computer lab is closing in ten minutes.
Morgan had a great weekend. She loved the Wiggles' concert. She was in a great mood when I got back to NY yesterday afternoon. She was also pretty happy to see me, which made me feel good.
Today's treatment followed the same pattern as the last few days. She actually slept through most of it today. She woke up at one point complaining of pain. We gave her half a dose of dilaudid and she went right back to sleep. Morgan was in one of her "I don't want to leave clinic" moods, but we still managed to get her back to the RM House without causing too much of a scene. She was very hateful for a period of time after we got back to the house, but she snapped out of it fairly quickly. Right now she is in the room watching the DVD of her dance recital and dancing along with every single number.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan's treatments will continue to be effective in ridding her body of this horrible disease forever.
4) Pray for Holden. It has to be hard for him with his Mommy, Sissy, Grandma, and Pawpaw all away.
God Bless,
Allison
Thursday, November 18, 2004
UPDATE NOVEMBER 19
I SPOKE TO MOTHER THIS MORNING JUST AS TREATMENT WAS FINISHING. TODAY'S TREATMENT WAS JUST LIKE THE LAST TWO DAYS. MORGAN NEED HALF A DOSE OF DILAUDID. THERE HAS BEEN ONE HITCH IN THE PLANS THOUGH. MOM CALLED ME THIS AFTERNOON AND SAID THAT THEY FORGOT TO GIVE THEM THE RESULTS OF MORGAN'S CBC. IF HER ANC IS OVER 20 THEN SHE DOES NOT NEED A SHOT. YESTERDAY, SHE WAS AT 18.1. SHE MUST STILL BE ON THE BORDER BECAUSE THEY WANT MY PARENTS TO TAKE HER TO URGENT CARE IN THE MORNING TO HAVE ANOTHER CBC DRAWN TO SEE IF SHE NEEDS THE SHOT. THAT IS A PAIN -- I HOPE THAT THEY GET FINISHED UP IN TIME TO GO TO THE WIGGLES CONCERT.
Hello Friends,
As I write this, I am in North Carolina and Morgan is approximately 800 miles away from me in NY. She was pitching one of her post treatment fits today when I got ready to leave. I called them from the airport to let them know I had arrived okay. I was told by Paw Paw that Morgan was in a great mood after I left. I guess I bring out the best in her.
Morgan had a great night last night. She had a terrific time at St. Catherine’s Park and McDonald’s. They had a talent show at the RM House last night. Morgan really enjoyed that. She even got up and danced a few times. She is a born performer.
Today’s treatment was almost identical to yesterday’s. She needed half a dose of dilaudid and the pain never seemed to be very intense. She wanted more pain meds but we held off. We had to finish treatment rather early today because the hospital had a special surprise in store for all the kids. At 10:45, the Wiggles made an appearance in the waiting room at MSKCC. There were lots of excited children there. Morgan was excited, but her state of mind was still kind of off following treatment. We did manage to take a picture of her with the Wiggles.
I hopped on an earlier flight and arrived in Greensboro around 3:00. The first thing I did was to call Jerry and let him know I had arrived. Then, I called Mom, Dad, and Morgan. They were once again walking to St. Catherine’s Park. Morgan refused to talk to me. Mom told me that they got free tickets to see the Wiggles at Madison Square Garden on Saturday. I am so happy for Morgan. I know she will love that.
I have decided that I am going to fly back to NY on Sunday. I need to be there more than Morgan needs for me to be there. I am sure Mom and Dad will handle everything just fine. I just have not been away from her during many of her medical treatments and it is hard for me to give up control of that.
I will probably do another update after Morgan’s treatment on Monday.
God Bless,
Allison
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Pray that Morgan's treatments will continue to be effective in ridding her body of this horrible disease forever.
4) Pray that the Lord will protect Morgan, Grandma and Paw Paw while they are out of town.
God Bless,
Allison
Wednesday, November 17, 2004
Hello Friends,
I know -- no update yesterday. Honestly, there was not really much to write about. Tuesday's treatment was just like Monday's. Maybe just a tad bit more painful. She needed two and a half doses of dilaudid rather than just two. Once again, treatment knocked her out and she came back to the room and took a good long nap. She did wake up in time for Grandma and Pawpaw to take her St. Catherine's Park. I, however, was told that I could not go to the park because I forced the Little Princess to wear a jacket that she did not want to wear. After the park, the trio hit McDonald's. Morgan had supper and then they came back to the RM House. Morgan stayed up 'til around 10:00 and then she hit the hay. She woke up in a great mood this morning and was all ready to hit the streets and head back to clinic. The trip to MSKCC was made even more pleasant by a RM House volunteer who greeted us at the door and presented Morgan with a Power Puff Girls pillow. That was really a hit with Morgan and she proudly showed her pillow to everyone at clinic.
I have been training Grandma to give Morgan her shots after I leave tomorrow. So far, it is going well. I am so fortunate to have parents who are willing and able to make this trip with me. I have always known that they spoiled me and I certainly count my blessings that they are my mom and dad.
Today's treatment went much better than the last two days. Morgan asked for pain medicine once so we gave her a half dose. I am not sure if she even needed that, but Morgan is a creature of habit. She fell asleep again today. This afternoon she complained of pain in her feet (a common side effect of 3F8) but I gave her Tylenol and that seemed to take care of it. We are wondering if HAMA is around the corner!?!?
Right now, Morgan and her grandparents have returned to St. Catherine's Park. I stayed at the RM House to do laundry and type this update. Tomorrow, my plane leaves NY at 3:15. I am still really nervous about heading out of here. In fact, I had a voucher for a free ticket on Northwest Airlines. I have cashed it in for a return ticket to NY on Sunday. The jury is still out as to whether or not I am going to use it. Morgan says that she definitely does NOT want me to come back to NY. Mom and Dad are not saying much about it because they feel like it is my decision to make (plus they know I will do exactly what I want to do anyway).
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Ask the Lord to grant us mercy in our travels. Pray that we will saftely return home.
4) Pray that Morgan's treatments will continue to be effective in ridding her body of this horrible disease forever.
5) Pray for Holden to be granted contentment while we are separated from him.
God Bless,
Allison
Monday, November 15, 2004
Hello Friends,
This is a pretty late entry -- I am sorry. Our day at clinic was a bit long today and then I had a case of laziness that prevented me from coming down to the lab.
We arrived in NY after a very uneventful flight yesterday afternoon. We quickly got settled into our room and relaxed for most of the evening. 6:00 came pretty early this morning so we were all tired as we made our way to clinic.
Today's treatment was pretty typical for a Monday. She was in quite a bit of pain. She needed two doses of pain medication to make it through. It also knocked her out. She slept most of the afternoon away. Morgan awoke at dusk in tears because she had slept the day away and could not go to St. Catherine's Park in the dark. We promised her a trip tomorrow. Then, she happily worked on school work while watching her favorite videos.
Morgan is doing great and loves being back in New York. We are so thankful for the progress she has made. Being here always reminds me of how thankful we are that Morgan has been in good health for such a long period of time. God has been so good to us.
Morgan's IEP meeting on Monday went well. We did not learn anything new. Morgan does very good work sometimes and does not so great work at other times. Her work is very inconsistent. As her mother, I know that Morgan is a special personality and often ignores things that she does not find interesting. Morgan is going to begin receiving special services at school. She is going to start occupational therapy (in addition to the OT she has at the hospital) and she is going to start meeting with a one-on-one teacher for short periods in the afternoon three days a week. We are hoping that this individualized instruction will help her to stay more focused.
I will try to do better about typing an update tomorrow afternoon.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Ask the Lord to grant us mercy in our travels. Pray that we will saftely return home.
4) Pray that Morgan's treatments will continue to be effective in ridding her body of this horrible disease forever.
5) Pray for Holden to be granted contentment while we are separated from him.
God Bless,
Allison
Saturday, November 6, 2004
Hello Friends,
I cannot believe that it is November already. This year has really flown by too quickly. I must admit though, it has been a terrific year for our family and we are very thankful for that.
This week has been full of the same old things that keep us busy every week and we are loving it. There is actually very little going on for me to report so this should be a rather short update.
Morgan is still getting yellow cards every day in kindergarten. Most recently, she has been writing on the desk. It is like she has this attitude of “I am going to do whatever I want and what are you going to do about it?” This is not all that surprising. I think her stubborn nature coupled with the defense mechanisms she developed during her fight with neuroblastoma made her that way. She is such a fighter and so tough. I am actually very thankful for her spirited nature. I think the Lord gave her that because he knew that she would need it to endure the trials that she would go through. However, it is certainly a struggle to get her to understand that her job at school is to cooperate. The only thing I worry about is that now she is beginning to tell us that she does not like going to school. She has a lot of school ahead of her and if she dislikes it now, I can only imagine what the next twelve years will be like. Her IEP meeting is Monday and hopefully that will be successful.
Holden is still enjoying school very much. Morgan and Holden have very different personalities. He has always been more laid back than his big sister. Again, I feel like this was a gift from God. If it was not for his happy-go-lucky attitude, he never would have been able to cope from all the periods of separation that he has had from the rest of his immediate family. Holden was 10 months old when Morgan was diagnosed with cancer. There were times in the period immediately following that horrible day when I would look at Jerry and say, “Where is our son?” I always knew he was in the competent hands of a family member or friend, but there were actually times when I had no idea who had my baby. He seems no worse for the wear and I am so thankful or that. He is still “almost potty trained”. He is having accidents here and there, but for the most part he has improved tremendously. I am almost certain he will be there before he starts kindergarten (that is a joke).
This Wednesday, Morgan will start getting her GMCSF shots. On Sunday, we will fly to New York to start her eleventh cycle of antibodies. We only have one more week at home together. I mentioned to Morgan something about getting ready to go back to New York. Holden heard me and ran to me and said, “Please stay with me Mommy and don’t go to New York”. That broke my heart.
Thanks so much for continuing to follow Morgan’s progress. We owe so much to all of you who have taken the time to pray for Morgan since this ordeal began in July of 2002.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) And please don't forget about all the other Neuroblastoma Warriors.
God Bless,
Allison
Saturday, October 30, 2004
THERE ARE NEW PHOTOS IN THE PHOTO ALBUM!
Hello Friends,
This week was definitely not as eventful as last week. We were just as busy as ever, but we did not have those dreaded scans hanging over our heads. In fact, we are still rejoicing about the fact that all of Morgan’s scans and tests came back showing NO EVIDENCE OF DISEASE! God has been so good to us; we are blessed beyond measure.
We had a wonderful time at the Make A Wish reunion at Carowinds on Sunday. It certainly was a reunion. I saw so many old friends and familiar faces. Most families were like us, celebrating the fact that they had made it through another year with a child surviving cancer or some other horrible disease. But, I did see a few families whom I knew had one treasured member of their family missing. For those families, the day was probably an excellent way to allow the brothers and sisters of angels the opportunity to enjoy themselves for a while.
The rest of the week was pretty uneventful for us. We all just enjoyed the normalcy of our daily routines. Morgan has had a more difficult time in kindergarten ever since Fall Break. It is nothing serious – she is just not behaving as well as we think she should. She now comes home on most days with a yellow card. She has had one red card too. She promises me each and every day that she will be good the next day and will come home with a green card. As an educator, this concerns me. But, Jerry and I are trying really hard just to sit back and let Morgan work things out on her own. She does not respond well to us putting a lot of pressure on her and trying to force her to be good at school. Of course, she is not having major problems – just talking a little too much and playing when she should be working. Everyday when she comes home, we examine her card and discuss it with her. We keep the green ones and Morgan is allowed to toss the yellow and red ones into the trashcan. I am hoping this will allow her to see that tomorrow is another day and an opportunity to do better.
We have a conference scheduled with Morgan’s teachers on November 8 to discuss her Individual Education Plan. I am assuming that she will be categorized as “Other Health Impaired”. This will allow her to receive special education services.
Holden is doing quite well. He is “almost potty trained”. He is doing so much better in that department now. But, I am certain that now that I have put that statement in writing he will regress. My children just love to make a liar out of me.
The kids are very excited about Halloween. Yesterday, both of them had parties at school. Tomorrow we are going Trick-or-Treating with Heather and Madison. Last year, Morgan was in a wheelchair for Trick-or-Treating so I am looking forward to seeing her run from door to door. Morgan is dressing as a bride (but she assures me that she is not really getting married yet even though her future husband is in her kindergarten class). Holden is going to be Spiderman. I think that is a fairly popular costume for boys this year. There were two other Spideys in his class yesterday. I will post some pictures of the blushing bride and our superhero soon.
The next big thing on the agenda today is a birthday party for our neighbor, Jake. He is having a petting zoo at his house and the kids are excited about that. I am interested in seeing how it is all put together and thinking that it might be a nice option for Holden’s birthday party next year.
I guess this is another one of those boring updates. I am honestly not sorry that our family is not providing more excitement. We have had enough excitement to last us a lifetime. We all prefer the quite lifestyle. Worry about yellow cards in kindergarten and potty training is much more fun than worrying about cancer. Going to Carowinds and birthday parties is way better than going to emergency departments and clinics. In two short weeks, our respite from medical things will come to an end. On November 14, we will once again fly to NY for a cycle of Monoclonal Antibodies. I am not dreading it though; I am thanking God for giving us the opportunity to receive this treatment and using it to allow Morgan to be cancer free.
God Bless,
Allison
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) And please don't forget about all the other Neuroblastoma Warriors.
God Bless,
Allison
Saturday, October 23, 2004
UPDATE OCTOBER 27:
The bone marrow results are in -- NO EVIDENCE OF DISEASE. Praise be to God!
There was one sample that was to small to get results on, but the others were great. We are not going to have that one redrawn since Morgan has been clean for over a year now. I told the clinic to call us only if the urine markers came back high, so the way I see it is no news is good news. Thanks for carrying us with your love and prayers.
Hello Friends,
It was another busy week here for the Barnes family. It seems like I begin all of my updates with a similar sentence. But, this week was a bit different. This past week was spent doing medical stuff. We have not had a week like that in quite awhile. We were at the hospital three days. I must admit though, it was nice to be able to come home at the end of each day at not go back to the Ronald McDonald House. There were a few hassles at Baptist this past week, but we have come to realize that this is how it goes in the medical world. We love MSKCC and are so glad that Morgan has been able to receive treatment there, but I think from here on out we are going to do as much here in North Carolina as possible.
On Wednesday, Morgan had her MIBG injection scheduled for 11:30. I arrived at clinic early in order to have her accessed. I prefer just to have her port accessed once and then leave it in for the duration of testing. Morgan’s prefers this too. When we arrived, we were told that they were just going to run an IV into her arm and do the injection this way. I know my child, and I knew that this would be a nightmare. Plus, my way of thinking is that since she has the port, we may as well use it. All of the clinic nurses were in a meeting so we had to wait to find someone who could access the port. We were a little late getting downstairs for the injection. Since the isotope has to be in her system for a certain amount of time, this pushed back the time of the scan on Thursday.
We arrived at the hospital around 9:00 for Morgan’s MIBG scan. We attempted to talk Morgan into having the scan without sedation. I was so proud of her. She climbed up on the table and was all ready to get started. The MIBG scan has to be done with the equipment really close to the patient’s face. As the scanner got close to Morgan’s face, the anxiety got the best of her. The nurse gave her a little versed to relax her. Well, it worked and she was not anxious at all anymore – she was drunk. Everything was so funny to her. She was laughing and giggling so much that she could not be still. The scan cannot be done unless the patient is completely still. Therefore, Morgan ended up having to be sedated. The scan took about 45 minutes to complete. I stayed in the room with her and I tried my best not to look at the image as she was being scanned. I always try my hand at armchair nuclear medicine and get myself in a panic when I see something light up. Despite my best efforts, I still looked. I saw nothing suspicious so I was very alarmed when the technician came back in and said the doctor had reviewed the films and wanted to do a more detailed picture of her abdomen. Cancer parents know that it is usually not a good thing when a second look is requested. So I asked her point blank if something showed up that they wanted to see. Of course, the technician is not really allowed to tell things like that so off the record she told me no. She said that something did not show up and they just wanted to make sure that nothing was indeed there. Ah ha – this made perfect sense. The last time Morgan was scanned at Baptist Hospital, a mysterious spot showed up around the site of her original tumor. This stumped everyone until Dr. Kushner took a look at it and confirmed that it was nothing. Morgan has had two perfect MIBG scans at MSKCC since then, but of course Baptist doctors knew nothing of that since MSKCC has no reason to send MIBG results to them. The second look was a 3D enhanced MIBG scan. It was actually pretty neat to see that image. It also looked perfect to me too, but remember I am not a doctor.
The second part of the MIBG scan also took 45 minutes. Morgan was scheduled to be in the sedation suite for bone marrow biopsies and aspirates at 11:00. Obviously, we were delayed and did not make it. Morgan must have been drugged pretty well because she did not wake up. When the scan was over, we called back up to the clinic to find out what to do with Morgan. The sedation suite was no longer available so we were told to come upstairs to the clinic and just hang out. Morgan was wheeled up there on a stretcher. Then, she was moved to one of the tables in an exam room. Finally, the call came to bring her down to the sedation suite. She was placed into a wagon and taken downstairs. She woke up about five minutes before it was time to be sedated again for the bone marrow to be removed from her body. I think we finally finished up around 3:30.
The drugs were pretty hard on Morgan. She was awake only for short periods of the evening on Thursday. When she was awake, she was very unsteady on her feet and remained drunk.
On Friday, we arrived in clinic and they sent us downstairs to the radiation department. Morgan has also been sedated in the past for CT scans. We spoke with the nurses and Morgan was very willing to do it without the sleepy medicine. They also have a new policy that patients can drink a liquid other than contrast if they are not to be sedated. Morgan was happy about this. She had a juice box and some sugar free Kool-Aid. She climbed up on the table and was perfectly still during the scan. The CT machine did not come down close to her face like the MIBG and the scan only took about 5 minutes, considerably shorter than the MIBG.
After the CT, we went back upstairs to have Morgan de-accessed. The nurse practitioner gave us the results of the MIBG – perfect. Morgan had the needle removed from her port and we were on our way out the door. I felt pretty special Friday afternoon because Morgan asked me to take her out to lunch – just the two of us. She always asks to go by daddy’s office and go to lunch with him when we are at the hospital. But, we had a ladies only lunch this time.
Morgan was able to go to Daisy Scouts Friday afternoon. After I dropped her off at scouts, I called back to the clinic to get the results of the CT – it was perfect too. Praise God!
Now we are waiting for the results of the bone marrows. I will let everyone know as soon as we hear something.
I want to thank my friend Heather for organizing the prayer vigil for us once again. Heather you are a friend in every sense of the word. You carry me. I love you and my kids adore you. For those of you who don’t know, Heather and I have known each other for about five years. I actually knew her husband, Stephen, first because we taught together at Atkins. Heather and I became close after Morgan got sick. To me, this is amazing. Often when a tragedy happens in someone’s life, they quickly learn who their true friends are. Some people do not know what to say, so they just stop calling and coming around all together. Other people can’t handle the sadness, so they stay away too. I think it is very rare for someone who is an acquaintance to step up to the plate and be willing to do anything and everything for the person in need. Heather has done that – and my whole family thanks her.
Heather, every time I hear the song “More Than You’ll Ever Know” by Watermark I think of you. I was thinking about getting up at church and singing it but I have thought better of that. But, I am going to post the words to it here so that everyone will know exactly how much your friendship means to me.
More Than You'll Ever Know
Something brought you to my mind today
I thought about the funny ways you make me laugh
And yet I feel like it's okay to cry with you
Something about just being with you
When I leave I feel like I've been near God
And that's the way it ought to be
'Cause you been more than a friend to me
You fight off my enemies
'Cause you've spoken truth over my life
And you'll never know what it means to me
Just to know you've been on your knees for me
Oh, you have blessed my life
More than you'll ever know
More than you'll ever know
You had faith, when I had none
You prayed God would bring me a brand new song
When I didn't think I could find the strength to sing
And all the while I'm hoping that I'll
Do the kind of praying for you that you've done for me
And that's the way it ought to be
'Cause you been more than a friend to me
You fight off my enemies
'Cause you've spoken truth over my life
And you'll never know what it means to me
Just to know you've been on your knees for me
Oh, you have blessed my life
More than you'll ever know
More than you'll ever know
You've carried me
You've taken upon a burden that wasn't your own
And may the blessing return to you...
A hundredfold, oh yeah...
A hundredfold, oh yeah...
In non-medical news, the kids are having a very busy weekend. Last night, they spent the night with Grandma and Paw Paw so that Jerry and I could go to a wedding. This morning, they went to watch their dear cousin, Smith, play soccer. And this evening, we celebrated Smith’s birthday with a party at his house. Tomorrow is the Make-a-Wish reunion at Carowinds. Morgan and Holden are both looking forward to that. Last year, we could not go because Morgan had a broken leg.
Wow! What a long update. Thanks to everyone who prayed for us this past week. We definitely felt it. So many of you have been with us throughout this entire journey and I firmly believe that your prayers have allowed this miracle to unfold.
God Bless,
Allison
Prayer Requests:
1)Ask the Lord to never again allow cancer to grow in Morgan’s body.
2)And please don't forget about all the other Neuroblastoma Warriors.
God Bless,
Allison
Wednesday, October 13, 2004
UPDATE OCTOBER 17
WE JUST WANTED TO LET EVERYONE KNOW THAT MORGAN'S TESTING SCHEDULE HAS BEEN SET. SHE WILL HAVE HER MIBG SCAN AND BONE MARROW BIOPSIES ON THURSDAY, OCTOBER 21. SHE WILL HAVE A CT SCAN ON FRIDAY, OCTOBER 22.
My friend, Heather, is once again putting together for a prayer vigil for Morgan and the rest of our family during this stressful time. If you are interesting in signing up for a half hour slot of time on these two days, please email her at HMcLeod@BBandT.com
Hello Friends,
You may not believe this but Friday I sat down and started typing an update. I got one sentence written and then something pulled me away from the computer (it was probably a child with the last name of Barnes). I never managed to finish it. Sorry! I apologize for leaving you hanging with important information like Holden’s urine test results, Morgan’s HAMA test, and Morgan’s upcoming testing schedule.
We have been very busy the last few (ten to be exact) days. Last Sunday, Morgan and Holden got to go the Dixie Classic Fair for the first time. The first and second autumns of her life, Morgan was too young to attend and get any enjoyment out of it. The third time it rolled around, her parents had just had a baby and life was just too crazy to think about going to the fair. During her fourth year, she was fighting for her life. The fifth, she was in New York getting antibodies and falling down and breaking her leg. So, here it is the sixth fair season of her life and she finally makes it to the fair. Morgan and Holden both had a great time. I love the fair too because it reminds me of those special fall days spent with my Grandpa Morgan who went with us to the Dixie Classic Fair each and every year.
Morgan finished up the first quarter of her first year of school. I cannot believe that kindergarten is one fourth of the way behind us. Morgan finished the quarter very well. She did an excellent job on her writing assessment. I am still shocked that kindergarteners have a writing assessment. Her teachers also shared with me that she is doing very well in math. She must take after her father in that department. I had lunch with her at school one day and met my future son-in-law (at least that is what Morgan told me). I also had the opportunity to go with her class on a field trip to the Baa Moo Farm. Morgan milked a cow, fed some chickens, gathered some eggs, fed a baby cow, went on a hayride, and did lots of other fun fall activities. On the field trip, I also got to meet Brittney, Morgan’s best friend in kindergarten. She is a sweet little girl and it made me so happy to watch Morgan interact with her. They held hands, traded sweaters, whispered, and giggled.
We have been on fall break the last few days. The school system has given Morgan and myself the whole week off from school this week. Daddy took a few vacation days and Holden took a break from school too. The four of us have been enjoying each other’s company and loving every minute of it. Tomorrow, Jerry and Holden will return to work and school. Morgan has an appointment for immunizations and I have to go to class tomorrow night. Friday, Holden’s class is going on a field trip to the Baa Moo Farm (déjà vu anyone?) and Morgan and I are going with him.
I guess that is all of the regular life updates and now on to the medical news. All of Holden’s urine markers came back within normal range. We can breathe a little bit easier for the next six months. We also got the results of Morgan’s HAMA test. She is still negative. This means that an eleventh cycle of antibodies is in her future. She will start her next cycle on November 15. We will have to do things a bit differently for this cycle. Morgan, Mom, Dad, and I will depart for NY on November 14. I am going to get things settled and then I am going to fly home on November 18. I have to take the Praxis (a test to get my school counseling license) on November 20. Morgan and my parents will return home the Friday after Thanksgiving. I am so thankful to my parents for helping me out once again. I am sure Morgan will be spoiled rotten when she comes back home. I will miss her so much, but I will also know that she is in capable hands. In fact, I am sure I will miss her much more than she misses me.
The other thing I was supposed to report on was Morgan’s testing schedule. We still have not heard anything about this yet. It will be two weeks tomorrow since I asked them to put a testing schedule together. I called last week and they said they are still working on it. I emailed them today and if they do not get something together soon, I guess I will just contact Dr. Kushner and have something scheduled in NY. The purpose of doing things here was supposed to be to make things easier, but if it is going to take this long to get things started, I don’t think it is going to be easy.
Holden had his first dentist appointment this past week. I am happy to report that he is a proud member of the Cavity Free Club. Jerry said that he was such a big boy. He climbed right into the chair with no problems and never acted like what was happening bothered him. As usual, he took everything with his normal laid back and relaxed personality.
NEW Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Pray that all of Morgan’s upcoming tests and scans will show no evidence of disease.
3) And please don't forget about all the other Neuroblastoma Warriors.
God Bless,
Allison
Saturday, October 2, 2004
There are new pictures in the photo album!
Hello Friends,
If it is possible this week was even busier for us than last week. I am not complaining though. I was having a conversation with someone this past week about how every night is now filled with some type of activity either for Jerry, the kids, or myself to participate in. This is a reason for us to rejoice. I am so thankful. It is by the grace of God that I have two beautiful, healthy children who are able to participate in activities. Praise God! He is so good – all the time.
Morgan and Holden are really starting to enjoy karate. The first week of class, Morgan got very upset when the teacher was coming around and letting the kids hit his hands. The teacher would playfully yell, “ouch” when the kids would strike him. Morgan thought that she was hurting him and refused to participate. It was cute that she was so concerned about this guy who has a black belt in karate. She honestly thought that her punches were hurting him. It also turned into a good learning experience in that we explained to her that anytime she is uncomfortable about participating in such an activity she should talk to an adult. I am very proud of the young lady that she is becoming.
I am also proud of Holden. He turned three on Tuesday. He is such a loving and affectionate child. The Lord certainly blessed him with the perfect personality for the circumstances in his life. I often remember times when Holden was still a baby and Morgan had just been diagnosed with cancer. There were actually times when I had no idea where he was and who was taking care of him. He never seems resentful about the fact that I abandon him so frequently to take care of his sister’s health needs. He is so easy going and laid back. He looks at life with a “whatever” kind of attitude. I am very lucky to be his mother.
Morgan had a routine clinic visit on Thursday. We did not even see a doctor – how great is that! They did her HAMA draw, a CBC, and blood chemistries. She was checked out by the nurse, we were told she looks great, and sent on our merry way. I did speak with the nurse about scheduling Morgan’s scans. Jerry and I have decided that we are going to do scans at home this time. Since Morgan is now in school, we want her to miss as few days as possible. Testing can be done here, antibodies cannot. They even agreed to draw her bone marrow from four sites rather than two, which is how they do things at MSKCC in New York. I will let everyone know as soon as I have her testing schedule. As you know, we really appreciate everyone praying for Morgan and the rest of our family during scan time because it causes so much anxiety for all of us.
Friday, I took Holden to the pediatrician for his three year check-up. She said he looks great. All of his intestinal issues have resolved themselves (Praise God) and he seems to be doing much better. His height and weight are both average and she told me not be get stressed out over potty training. He will do it when he is good and ready – on his time and not my time. He is actually making very very small steps in the right direction in the potty training department. I can honestly say that I think he will be there by the time he is four. I have 361 days to get the job done. Holden provided a urine sample so that they could do a neuroblastoma test on him. We have this done every six months just to keep ourselves sane.
On Friday, I went with three other mothers to a Mom Time Getaway, an overnight activity. This was a conference on mothering led by Lisa Whelchel who played Blaire on the Facts of Life. She is a devout Christian with lots of good ideas on being a Godly mother. Not only was it informative, but it was extremely fun. One of the things that she focused on was turning over control of your children to their Heavenly Father. He loves my children so much more than I do so I must entrust them to his care. I think this is of particular significance for anyone who has faced some type of trial with a child. I know that God has a perfect plan for Morgan. I may not know what that perfect plan is, but I know it exists. He will take care of her and me too.
Grandma Penny was kind enough to come stay with the kids today so that Jerry could attend an Effective Fathers Workshop. We are hoping that we learned enough over this weekend so that we don't absolutely ruin our kids. You may laugh, but I do pray everyday that the mistakes I make will not harm my children in any way. Being a mother is much harder than I ever imagined, and I am not just speaking in terms of having a child with cancer. It is a hard job under the best of circumstances. I think it is so hard because the stakes are so high. The rewards are immeasurable, and motherhood is definitely the most rewarding thing I have ever done.
In the coming week we should get results from Morgan’s HAMA test and from Holden’s urine markers. We should also get a more definite testing schedule for Morgan.
NEW Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Pray that Morgan will be HAMA positive if she no longer needs 3F8 treatment, and HAMA negative if her body still needs these drugs in order to be cancer free forever.
3) Pray that Holden’s urine tests will come back within the normal limits to put our minds at ease after these past few weeks of strange health issues with him.
4) Pray that all of Morgan’s upcoming tests and scans will show no evidence of disease.
5) And please don't forget about all the other Neuroblastoma Warriors.
God Bless,
Allison
Saturday, September 25, 2004
Hello Friends,
It is amazing how easy it was to get back into the swing of our normal busy lives. As usual, we have had another crazy week here.
Donate Dough and Down a Dessert for Morgan was a tremendous success last Saturday evening. It was a glorious night and there was a slight chill in the air. It felt like fall, one of my favorite times of the year. There were lots of yummy things to eat and our neighbors and friends were very generous in giving to our family to help pay Morgan’s medical bills. Our family is truly grateful to everyone involved. I would like to send a special thank-you out of Robin Boger, Melissa Freeman, and Kendra Lashley. These three ladies are wonderful friends and neighbors. The y worked so hard in pulling this event together and their effort was obvious by the success of the event. We would also l like to thank our next-door neighbors, the Maguires. Mike is our Carrabba’s connection. Not only did he donate a wonderful dessert and a great gift certificate for the silent auction. But, we also received a gift certificate for our family to use. Thanks so much. And, the folks at South Fork Cleaners in Winston-Salem were also very generous in their donations. Thanks again to everyone. We have learned so much about the kindness of others since this ordeal began.
For the first time in two years, Holden’s health was our family’s focus this past week. Saturday night, he woke up throwing up again. He seemed fine all day on Sunday. Sunday night, he started throwing up even more. He added some diarrhea to the mix Sunday night too. We kept him home from school on Monday and I took him to the doctor. He complained most of Sunday night that his tummy was hurting. His pediatrician could give me no concrete answers as to what was wrong with him and was very concerned that this had been going on for over two weeks. He admitted that it was very unlikely for a virus to last that long and to be as sporadic as his condition has been. He did a CBC and other tests and they all came back fine. Dr. Franklin told me that worst-case scenario could be that we are dealing with something like irritable bowel syndrome. Of course, in the back of my mind I was thinking about a disease called neuroblastoma, which to me would be much worse than irritable bowel syndrome.
Monday afternoon, Holden was fine. Then, Monday night he started having very bad abdominal pains. He would just lay on the floor and cry. He used the potty (that’s right, but he is still not officially “trained”) many times and then seemed to start feeling better. Tuesday, he was great with no problems at all. Wednesday, we received a phone call from his school that he had diarrhea and he needed to be picked up. He stayed with Grandma and Paw Paw on Thursday and Friday and his diet was modified by order of the pediatrician. Things seem to be better but I am still worried to my whit’s end.
Morgan began showing symptoms of cancer around her third birthday. She was diagnosed five days after she turned three. Holden will be three on Tuesday (September 28). Morgan’s first symptoms were not identical to Holden’s but they did come and go. Plus, I know of lots of other NB kids who’s problems started out just like Holden’s. I am not saying that he has this horrible disease, but I am saying that it is on my mind. We have routinely had his urine checked for neuroblastoma since Morgan was diagnosed. He has his three-year check-up on October 1 and we will do these tests then.
We have managed to have some fun this past week too. Monday, Morgan and Holden became Little Dragons. This is a karate program designed for young children. We did this to help the kids with social skill, self-discipline, and listening skills. We hope it helps!
Morgan had a great week at school. She got her green light everyday. Ms. Singletary told me that Morgan has really improved since the beginning of school and her progress report indicated this too. She has also started wearing an auditory trainer at school. Morgan was headphones and the teacher wears a microphone. This helps drown out all of the background noise in the classroom, which really distracts kids who have had hearing losses like Morgan has had.
Today we had a major celebration at our house. We had Holden’s third birthday party. It was a wonderful afternoon. I am still in a state of shock that my little guy is almost three. He is certainly not a baby anymore. He thinks that today was his birthday because today was his party. He is telling everyone, “Now I’m three”. He still has a few more days of being two, but I am not going to spoil his fun.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body.
2) Please pray that all of Holden’s health issues will resolve themselves and will prove to be nothing serious. Ask the Lord to protect him from ever having to endure what his big sister has had to go through.
3) And please don't forget about all the other Neuroblastoma Warriors.
God Bless,
Allison
Saturday, September 18, 2004
Hello Friends,
Home Sweet Home! It is so good to be back in North Carolina even though the weather is not too great. That just gives me an excuse to stay inside all day and enjoy my family.
We had a very smooth trip in last night. We were able to catch an earlier flight. It was slightly delayed because of the horrible weather here at home but we were still able to get home much earlier than planned. We got home early enough that we could stop by a local restaurant and have some good ole southern food and sweet tea.
Friday’s treatment was much like Thursday’s. It was a bit more difficult for Morgan to recover and she was in a pretty bad mood until well after we had arrived at the airport. She was pushing my buttons in a way that only Morgan knows how to do. But, by the time we arrived at home she was in a pretty good mood. And of course today she is great. I think that most people who only know Morgan in NY would be surprised by how different she is at home. She can still be pretty demanding, but nothing like that NYC personality.
Donate Dough and Down a Dessert for Morgan will go on tonight rain or shine. If it is raining, it will be held at a Lewisville Methodist Church at the picnic shelter behind the sanctuary. (Robin, thanks so much for working all of this out and posting the info in the guest book). My sweet tooth is looking forward to it. Monday I am going to get back into a healthy eating pattern, but Monday is still a few days away.
I also want to take a moment to say thank you to Heather. I know you will read this because you will give me a hard time if I don’t update in a timely fashion (SMILE). Anyway, you are a true friend. Not many people would drop everything for two weeks to join me in NY. I know that it was not easy living with Morgan and me. Not to mention the fact that you had to be away from your own little girl to give so unselfishly to mine. Words cannot express how thankful we are to you. I am so lucky to have you as a friend and I love you. And Stephen and Madison, thank you for giving up your wife and mommy for two weeks to help my family out.
Okay, don't look for any new updates for a week or so. We are planning on just living a normal lifestyle with no surprises of any kind. Thanks for supporting our family in so many ways.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION:
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Thursday, September 16, 2004
Hello Friends,
One more day of treatment and then cycle 10 will be officially over. I will be sitting in the North Carolina rain in about 32 hours (give or take). Oh sweet it will be. I keep humming James Taylor's "In My Mind I'm Going to Carolina".
Yesterday was another decent day. Morgan was on a rampage from about 11:00 to 2:00. For whatever reason, she was very irritated at me and had no problem letting me know it. She was in one of those states where nothing I could say or do was right. In fact, everything I attempted was very wrong. We had decided that we were going to go and see Ground Zero yesterday. Heather has never seen it and I have never seen it up close. One of the reasons Morgan was so mean was because she did not want to go anywhere. And remember, yesterday's treatment went very well. It is not like I was trying to drag her out of here with her feeling horrible. We planned on leaving around 2:00. As we are getting ourselves ready to walk out the door, she informs me that she is hungry for popcorn. Of course, we have no popcorn and I tell her she is going to have to wait. She had not mentioned popcorn for the entire three hours that she was letting me have it. Okay, so I finally reached my breaking point. I yelled at her and got so upset that I finally started crying myself (these things happen pretty frequently during our Big Apple trips). After my tears started flowing, she told me to please stop crying because I was breaking her heart. That made me feel about an inch tall. Well, I picked her up and held her close and we both cried together for a few minutes. Then, we were ready to go. Morgan relaxed in the cab on the way over and rested in the stroller while we walked around. By the time we hopped on the subway to come home, she was just dandy. The rest of the evening went very well.
Today's treatment may have been a little more painful than yesterday's. She need two half doses of dilaudid. But, she recovered a lot quicker today. She has been in a good mood ever since we got back to the room (with the exception of a few minor things setting her off). My Very Hungry Caterpiller is now up in the room eating popcorn and watching the Power Puff Girls (what a horrible cartoon that is).
Last September, Morgan got an ear infection that would not go away. You may recall that she had to start antibiotics a few weeks ago due to another ear infections. Of course, while Morgan is receiving treatment up here she is completely checked out every day. The nurse practitioners kept telling me that her right ear was still a little red even as she was finishing up with the amoxicillian. Yesterday, the nurse practioner said that it was finally starting to look better. Today, the NP took a look at her left ear and said that it is now beginning to look infected. The exam took place today after treatment. Tomorrow she is going to come in before treatment and see if it still looks infected. She believes that it is an infection because Morgan's lymph nodes on that side are also swollen. If she does indeed have an infection, she will start another antibiotic, probably augmentin. Last year, it took three different antibiotics to finally get rid of that infection. Hopefully, we will get this taken care of since quickly since Morgan already has some degree of hearing loss. Please pray that this is indeed an ear infection and nothing more serious and that it can be cured fairly easily.
After I finish this update, I am going upstairs to start packing. Our flight out tomorrow is not until 6:30 which will have us getting into Greensboro after 8:00. However, we are having a car pick us up at 12:30 in hopes of catching an earlier flight. I will probably not do another update until we are home.
FUNDRAISING INFORMATION:
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Wednesday, September 15, 2004
Hello Friends,
Two more days of treatment and then we will be headed back to beautiful North Carolina!
Yesterday ended up being a very pleasant afternoon. We strolled to Central Park in order to find some cotton candy for Morgan. While we were there, she rode the carousel twice. Then she ate her cotton candy. Then, she ate a popsicle. Then she had a bag of chips. Then she had some gatorade. Then she had another bag of chips. As you can see, her appetite is very good these days. After her feast, we casually strolled back towards the RM House. Again she asked to eat at the Three Star. As you can imagine, she did not eat very much of her dinner. But she did have about half a pancake. When we came back to the room, she asked for pizza. As I was headed out to get it, she changed her mind and said she wanted popcorn. Easy enough -- she ate an entire bag of microwave popcorn last night before she went to bed.
Treatment today was probably the best day ever. Morgan did not seem to have much pain at all. We gave her one dose of diluadid and she did not ask for any more. I think she actually slept through part of the treatment and this is something that she rarely does. She was no happy when it was time to leave clinic because she wanted to lay around and watch TV. But, being the mean mother that I am I scooped her up and placed her into the stroller. She argued with me all the way back to the RM House, but she was not all that loud. I am not sure what her problem was because she did not really even seem mad. She is probably just very tired of being here and feeling pretty frustrated about it.
That is about all to report today. There has been very little excitement for us lately and that is beautiful news. I will do another update tomorrow.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Pray for our safety as we travel home on Friday.
4) Pray for Holden and Madison who will be without their mommies for the next two weeks. Ask Him to give them a spirit of contentment and joy. Also pray for their daddies as they do the single parent thing.
FUNDRAISING INFORMATION:
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Tuesday, September 14, 2004
Hello Friends,
Another day of treatment is behind us and we are one day closer to heading south.
Yesterday ended up being a rather lazy afternoon. Morgan eventually allowed me to come back into the room. She watched videos while Heather and I read. One good thing about coming to NY is that I get to do a lot of reading. With all I have going on at home, I do not get to read as often as I would like. Therefore, I just save up all my books and bring them up here to get in some quality reading time.
Last night, Morgan wanted to go the the Three Star for dinner so of course we did. Then, we went to the little toy store close by. I have about spent my quota for this trip on presents for the kids so I refused to by her anything. Well, I actually refused to by her anything because they did not have anything that really interested her. In fact, she just wanted to buy something for the sake of buying it never mind the fact that whatever we bought would not ever be played with. So anyway, we left the toystore empty handed. That started the whole thing again about how I could not stay in the same room with her. She eventually got over that and the rest of our evening was pretty quiet.
Treatment today was pretty much like all the other days this cycle. She had two half doses of diluadid. I am almost positive that she did has not HAMA'ed yet but I feel like she is very close. Heather commented that the treatments are not nearly as intense as they were when she came up with me in December. We spoke to Dr. Kushner about what is coming up next. We tried to move the dates for the next cycle. As it stands right now, Morgan has to be here over Thanksgiving. I have to take the Praxis (my counselor eduation boards) on November 20, which is the same weekend she is due to be in NY. Therefore, we decided that if Morgan does not HAMA this time she will make the next trip up here with Grandma and Paw Paw and I will stay in NC. That will be much harder on me than Morgan, but I know my parents will enjoy it. We looked at moving things back but no other weeks were really convenient for us. Mom and Dad have already said that they will not mind being here over Thanksgiving, so that is the plan if Morgan does not HAMA.
I also mention the dreaded "S Word" to Dr. Kushner. That would be scans. Morgan will be due for them again around the end of October. Just the mention of doing them makes me nervous. I hate scans. I know that they are necessary but they cause so many tense moments around our house. I told Dr. Kushner that I think we will do scans at home this time. Since Morgan is in school now, this plan will allow her to miss fewer days. I am going to talk to the doctors at Wake Forest and make a decision then.
Morgan has discovered a new food that she likes. She had cotton candy for the first time while we were at Coney Island Friday night. She loved it and told me that she wanted some more today. They sell it at the carousel at Central Park so we may have to walk over there today to get here some more.
As always, thanks for checking in with us and for keeping our family in your thoughts and prayers. I will try to do another update tomorrow following treatment.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Ask for the Lord to bless our upcoming trip to New York. Ask Him to grant us safe travel and effective treatment for Morgan.
4) Pray for Holden and Madison who will be without their mommies for the next two weeks. Ask Him to give them a spirit of contentment and joy. Also pray for their daddies as they do the single parent thing.
FUNDRAISING INFORMATION:
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Monday, September 13, 2004
Hello Friends,
Only four more treatments to go and then we are headed south!
We had a terrific weekend. On Friday, I wrote that I was concerned about Morgan because she had no energy at all. She woke up around 4:00 ready to go. The trip to the acquarium was fabulous. The acquarium normally closes at 5:00, so the guests from the RM House had the whole place to ourselves. Morgan had a nice time. I ended up being thankful that she had the nap. It was a rather long night for her because after we returned from Coney Island we headed to the Three Star for a late dinner. It was close to 11:00 before we were bedded down for the night.
On Saturday, we managed to do all of Morgan's favorite things. We returned to the Three Star for breakfast and then headed out. We walked to Central Park. Our first stop was the zoo gift shop. Morgan has never expressed any desire to go to the Central Park zoo, but she loves the gift shop. Then we took a horse and buggy ride through the park. Then we walked to Times Square. They were having a street fair. Morgan enjoyed eating at the fair. Then we went to Toys R Us and Morgan had a ride on the ferris wheel. We then walked back to Central Park and Morgan rode on the carousel. By the time we got back to the room, Heather and I had very tired legs from all of the walking we did.
Sunday, we walked a lot too. We went back to our favorite diner for breakfast and then we headed towards the zoo. We found another street fair on Third Avenue so we took most of that in. Then we went to Central Park and let Morgan play on one of the playgrounds. In was our intention to go to the zoo, but Morgan declared that she would rather come back to the room so that is what we did. I think I have intended on going to the Central Park Zoo about 8 times, but I have never made it there.
I was glad when Monday rolled back around because it means that we are one day closer to getting home. Sometimes I feel like I am just wasting time up here on the weekends. Treatment today was probably a little harder on Morgan than last week, but it was nothing like some of the harsh treatments I have seen in the past. Morgan tried to pull that "I want to stay at clinic" routine. I convinced her to leave by telling her that I would take her to the park. She agreed and I told her she could only stay at the park as long as she would not yell at other children (dilaudid makes her a real monster and today she had two half doses). She lasted about 5 minutes at the park. Not only did she yell at a little boy, but she yelled at his mother too. Therefore, I loaded Morgan up into the stroller and we left. She has not been real happy with me since that happened. In fact, every time I go back into the room she tells me that I need to go somewhere else. Oh well, I can't be the hero all the time!
I would like to thank our friends at Hope Moravian Church for hosting a benefit for our family yesterday. Of course, Morgan and I could not attend but Jerry, Holden and my parents had a great time. I have heard that my darling little boy enjoyed quite a few plates of icecream and cake. Again, thank you all for you kindness and Christian love.
Speaking of my son, he woke up sick again Saturday night. I do not like this one bit. Random illnesses in the days prior to turning three years old have led to a horrible nightmare for our family in the past. Please pray that there is nothing seriously wrong with Holden.
I am going to attempt to return to the room now. Morgan will probably dismiss me as soon as I walk in. I will try to do another update tomorrow.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Ask for the Lord to bless our upcoming trip to New York. Ask Him to grant us safe travel and effective treatment for Morgan.
4) Pray for Holden and Madison who will be without their mommies for the next two weeks. Ask Him to give them a spirit of contentment and joy. Also pray for their daddies as they do the single parent thing.
FUNDRAISING INFORMATION:
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Friday, September 10, 2004
Hello Friends,
The first week of treatment is now behind us. It has been an okay week, all things considered. We are rejoicing in the fact that we are now on the downhill slide and this time next week we will be making preparations to head home.
Last night, the fine folks from the Elizabeth Arden Red Door Salon came to the RM House for a night of pampering for the families who are residing here. Morgan had a manicure, I had a manicure and a haircut, and Heather had a manicure and a facial. It was a lot of fun. At first, Morgan did not want to go but after she got down there she seemed to have a good time. My hair had gotten long and rather "big" since I have a lot of natural curl. Morgan took one look at my new do and said, "is that how it is supposed to look?" When I said yes, she said "well it is beautiful".
Morgan did not have to have a GMCSF shot this morning because her ANC was 22 yesterday. She does not have to have it if it gets over 20. When they took her blood today, it was 28. Therefore, she does not have to have it at all this weekend. We will take the shot with us to clinic on Monday and they will determine whether or not she needs it after they do a finger stick.
Today Morgan was moved into a private room. She did not like this at first, but we told her it was the princess room and she bought into it. There are so many "Morganisms" that we must follow and having a private room sure makes it easier. For example, sometimes all the lights have to be out. Sometimes no one is allowed to talk. We are hoping that we get to stay in the princess room next week too.
I do not think Morgan had as much pain today as she normally does. The first time she asked for pain medicine she was not really acting like she was hurting and the actual infusion had already ended and she was just getting ready to get the flush. Our nurse injected her line with some saline in order to convince Morgan that she was getting some narcotics. Morgan was not fooled. She screamed that it did not hurt right. She never really complained of pain, she just kept saying it did not hurt right. We finally gave in and gave her a half dose of dilaudid. She kept asking for it even after the flush had finished too. She pitched a really loud fit, but since we were in our own room it did not matter. As soon as I told her that there was no more pain medicine to give her, she told me she was ready to get out of there. I am beginning to believe that she has some kind of situational addiction if that is such a thing. She depends on those drugs while she is receiving treatment, even if she does not really need them. I may be wrong. She may actually be in pain, but I am definitely not seeing her react that same ways she has reacted in the past.
Right now she is acting as if she feels terrible. I have never really seen her quite like this after 3F8. It is like all of her energy is completely zapped. She was feeling fine beforehand though. She is also complaining that her legs and tummy hurt. This could be a side effect of treatment or it could be a result of her white count being so high. I am kind of worried about her and will feel much better when she is up and dancing around the room again. It is almost like I miss seeing her have one of her tantrums because at least she had to energy to do it.
Tonight, the RM House is taking a group to the NY Aquarium at Coney Island. We will go if Morgan feels up to it. We do not really have any other plans for the weekend other than to get some rest.
Look for another update on Monday.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Ask for the Lord to bless our upcoming trip to New York. Ask Him to grant us safe travel and effective treatment for Morgan.
4) Pray for Holden and Madison who will be without their mommies for the next two weeks. Ask Him to give them a spirit of contentment and joy. Also pray for their daddies as they do the single parent thing.
NEW FUNDRAISING INFORMATION:
"SUNDAE SUNDAY"-A benefit concert will be held 3:00pm to 6:00pm, Sunday,
September 12th, on the Hope Moravian Church lawn. "New Mercy" and "Solid Rock" gospel quartets from King, NC, will be performing. Bring a blanket or your favorite lawn chair and prepare for an afternoon of great spiritual music, fellowship, and refreshments. Cake and ice cream with all the trimmings will be served. There will be no charge for the concert or refreshments. A donation box will be available for donations, with proceeds being divided between cancer patients Morgan Barnes and Kyle Neve, to help with their medical expenses. (Hope Moravian is located on in Winston-Salem. It is on Hope Church Rd., which is off of W. Clemmonsville Rd. (close to Stratford Rd. intersection).
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Thursday, September 9, 2004
Hello Friends,
I know that I promised an earlier update, but the computer lab was closed on Tuesday and we were very busy on Wednesday.
Our family enjoyed a great weekend before we left to come to NY. Holden woke up throwing up on Sunday night. To tell you the truth I was kind of relieved. As a cancer mother, it always makes me feel better when both of my kids have the same symptoms. This convinces me that it is a stomach bug or something. Since Morgan was sick on her stomach earlier in the week, I understood why Holden was sick. Of course, we were worried that he would get an ear infection too. But, I spoke with Jerry today and his ears (and the rest of him too) are fine. I miss him tremendously.
We had a very uneventful flight into NY on Monday. The weather was great but that quickly changed. We woke up Tuesday morning to find downpours outside. We made it to clinic without getting too wet. Morgan took on her usual "New York Clinic Persona" as soon as we walked in the door. She got mad at me because the playroom was not open yet. (And I did not even know that I was in charge of such things.) We actually walked through the waiting room telling people that her mom is mean to her. I wanted to crawl into a whole by this point.
Morgan did well with treatment on Tuesday. She actually did great considering that it was the first treatment after an eight week break. Normally, the first treatment of a cycle is pretty tough on her but that was not the case on Tuesday. Wednesday's treatment was very similar to Tuesday's with no major surprises. I was actually able to get her out of the clinic without a major scene on both of those days too. Overall, this is the best start of treatment that she has ever had.
We woke up Wednesday morning to find that it was raining even harder than it was on Tuesday. It was raining so hard in fact that roads were flooding and the mass transit system in NYC came to a standstill. It was good that our feet are our means of transport, except for the fact that we got drenched. Morgan stayed nice and dry nestled down into her stroller with the plastic cover on it. Heather and I were so wet when we got to clinic that we had to strip from the waist down and wrap ourselves in blankets while Morgan's roommate's mother took our clothes to a dryer.
The hospital gave us tickets to see "The Lion King" yesterday. It was a good idea, but a little too much and a little too soon for Morgan. The show started at 2:00. We hurriedly got her out of clinic and into a cab so we could make the show. She recovered fairly quickly on Tuesday and I was expecting the same thing for Wednesday. Well, she threw up once before the show and twice during the show. By the way, kids who have had cancer are really experts and throwing up. I handed her a bag and she did her business while I watched the show. I guess the people who were sitting around me were kind of surprised, but Morgan can really do this with no fuss or mess and she is pretty quiet about it too. (Sorry if that is too much information.) We finally decided to leave early because she did not look like she was feeling any better. We left with one scene left. We walked out of the theater around 4:30 and the rain was once again pouring down. It is very hard to find a cab between 4:00 and 5:00. After trying unsuccessfully for a half an hour, we flagged down some of New York's Finest and they got a cab for us. Many thanks go out to the NYPD for going above and beyond to call of duty. And of course, for the second time in one day we were soaked again.
We woke up to the rain again today. Fortunately, it was a slow drizzle by the time we headed out for clinic. I think the rain is over for the most part and they are calling for a nice weekend. Today's treatment started off very similar to the last two days. Morgan did not seem to be in that much pain. In fact, she had two half doses of diluadid and that was all she needed. However, right as the flush was ending she snapped. She got a very bad attitude and started screaming. Morgan's roommate, Lana Beth, had not gotten to the intense part of her treatment yet and she was sleeping. The last thing I wanted was for Morgan to wake this child up. Therefore, we got Morgan out of there fairly quickly today. She was not happy. But, the fit she pitched was not nearly as bad as some I have seen in the past. Right now, she is in the room watching videos with Heather. She is being a bit demanding and grouchy, but overall she is doing great.
That is about all for now. I will try to do another update after tomorrow's treatment.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Ask for the Lord to bless our upcoming trip to New York. Ask Him to grant us safe travel and effective treatment for Morgan.
4) Pray for Holden and Madison who will be without their mommies for the next two weeks. Ask Him to give them a spirit of contentment and joy. Also pray for their daddies as they do the single parent thing.
NEW FUNDRAISING INFORMATION:
"SUNDAE SUNDAY"-A benefit concert will be held 3:00pm to 6:00pm, Sunday,
September 12th, on the Hope Moravian Church lawn. "New Mercy" and "Solid Rock" gospel quartets from King, NC, will be performing. Bring a blanket or your favorite lawn chair and prepare for an afternoon of great spiritual music, fellowship, and refreshments. Cake and ice cream with all the trimmings will be served. There will be no charge for the concert or refreshments. A donation box will be available for donations, with proceeds being divided between cancer patients Morgan Barnes and Kyle Neve, to help with their medical expenses. (Hope Moravian is located on in Winston-Salem. It is on Hope Church Rd., which is off of W. Clemmonsville Rd. (close to Stratford Rd. intersection).
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Saturday, September 4, 2004
NEW PICTURES WERE ADDED TO PHOTO ALBUM ON SEPTEMBER 1 AND THERE IS SOME NEW FUNDRAISING INFORMATION TOO!
Hello Friends,
The last week has really flown by. I am in a state of shock that it is once again time to return to NY. Because of the Labor Day holiday, MSKCC is closed on Monday. This means we get one extra day at home. We will fly out of Greensboro on Monday around 3:00 and should be in the Big Apple around 4:30.
Morgan had an excellent week at school. She only lost her green card one time and that was for talking while the teacher was talking. As a former talkative student and a former teacher, I know that this is a fairly common thing.
Morgan is no longer vomiting. She did however wake up Wednesday night crying. This is something that she was doing back in July 2002, so we were a bit startled. Morgan is a very good sleeper and always has been except in times of sickness. Sometimes she will wake up at night calling for her daddy but I think this is more out of habit than anything else. She normally does not even stay awake long enough to see if anyone comes in to check on her. Wednesday she woke up and did not go back to sleep. She complained that her ear was hurting. Therefore, on Thursday Jerry took Morgan to the pediatrician to find that she does indeed have an ear infection. It is so weird now. We are actually thankful and relieved that she has an ear infection. We can deal with the normal childhood things. Morgan is now on antibiotics and seems to be feeling great.
We decided not to go through with our beach trip this weekend. We made this decision early in the week when we were not sure what Hurricane Francis was going to do. Speaking of which, please say a prayer for all who are in the path of this storm. Ask that no one lose his life to this fury of nature. We have a fellow neuroblastoma warrior who lives right in the path of the storm. Please remember CAM and his family. Cam was supposed to receive chemo today and his mother did not think he would be able to get it because of the hurricane. The storm adds a whole new dimension of destruction when you are fighting cancer.
Our little traveler is looking forward to our upcoming trip to NY. I am always amazed at how willing she is to jump back on the plane every eight weeks to go to NY. The treatments she receives are so painful, and she has never once even suggested that she did not want to go. I have a feeling we are in for a fight on Monday though. My friend, Heather, is making this trip with us. The last time Heather went, Morgan’s best friend, Madison, accompanied us. Heather and I decided that it is hard to deal with two children, so this time Madison is going to stay home. Every time I mention that Heather is going with us, Morgan says “and Madison too.” She is a very stubborn child and is not accepting the idea that her friend is not going to NY with us.
Yesterday we had a very pleasant surprise. The phone rang and the caller id told me that it was good old Memorial Sloan Kettering Cancer Center. Every time they call my heart skips a beat. The girl calling was from the child life department. She told me that they had free tickets to see the matinee of the Lion King on Wednesday and wanted to know how many I wanted. Needless to say, we got three tickets and backstage passes. The show starts at 2:00. I am just hoping that Morgan will have recovered from treatment in time to go.
The rest of our family is doing well. Holden is still helping me to do a lot of laundry. He may have made some slight improvements in the potty training department, but he is still not there yet. Jerry had a busy week because they moved his office at work. He no longer parks really close to his building so going out to eat at lunch is just not convenient for him anymore. Poor guy – as a person who has always worked in the schools and never really had the option of going out to lunch, I really feel no sympathy for him on this one. I am sure he will manage somehow.
My graduate class underwent a change and we got a new professor. I had just gotten my situation straightened out with the other one. Our new professor is requiring a lot of work than we did not have in the other class. She also has a strict attendance policy, but she knew of my situation and said she would work with me. I guess the other professor gave her a heads up. I am just anxiously awaiting December 2, when I am officially finished with grad school --- FOREVER. No one need worry about me darkening the door of their classroom ever again. That’s right – I am declaring right now that there will never be a PhD behind my name. Since it has taken six years to get my Masters, I can’t imagine how old I would be if I tried to get my Doctorate.
We are savoring our weekend together. Jerry and I are having a “date night” tonight (something we hardly ever do) and the kids are going to spend some time with Grandma and Paw-Paw. I guess I will pack our bags sometime tomorrow and we will head out on Monday. Look for another update after Morgan’s first treatment on Tuesday.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
3) Ask for the Lord to bless our upcoming trip to New York. Ask Him to grant us safe travel and effective treatment for Morgan.
4) Pray for Holden and Madison who will be without their mommies for the next two weeks. Ask Him to give them a spirit of contentment and joy. Also pray for their daddies as they do the single parent thing.
NEW FUNDRAISING INFORMATION:
"SUNDAE SUNDAY"-A benefit concert will be held 3:00pm to 6:00pm, Sunday,
September 12th, on the Hope Moravian Church lawn. "New Mercy" and "Solid Rock" gospel quartets from King, NC, will be performing. Bring a blanket or your favorite lawn chair and prepare for an afternoon of great spiritual music, fellowship, and refreshments. Cake and ice cream with all the trimmings will be served. There will be no charge for the concert or refreshments. A donation box will be available for donations, with proceeds being divided between cancer patients Morgan Barnes and Kyle Neve, to help with their medical expenses. (Hope Moravian is located on in Winston-Salem. It is on Hope Church Rd., which is off of W. Clemmonsville Rd. (close to Stratford Rd. intersection).
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Saturday, August 28, 2004
NEW PHOTOS HAVE BEEN ADDED IN THE PHOTO ALBUM!
NEW FUNDRAISING INFO HAS BEEN ADDED AT THE BOTTOM OF THE PAGE!
Hello Friends,
I cannot believe that Morgan and I only have one week left at home before we return to New York for Morgan’s tenth cycle of antibodies. The last eight weeks have really flown by quickly. I guess that is because we have had so much going on during the last two months.
Morgan is still adjusting to kindergarten. She had more good days this past week than bad days. I think I was having trouble adjusting to kindergarten too but I failed to see it for a while. Over the last few days it has hit me that it has been tremendously hard for me to turn her over to someone else to take care of for such a long period of the day. Now that I have realized this, my emotions have leveled out some.
What have we been up to the last week? Saturday, Aunt Ruffin and I took all four kids, Smith, Morgan, Holden and Rachel to have a picture taken. That was very tiring. I had no idea how difficult it would be to get this picture taken. We tried for over an hour only to get one shot that was decent of all four kids. I think the kids enjoyed being together (as they always do) but they were not as interested in taking a picture as their mommies were. I have decided to do this with Seth, my nephew from the other side of the family, before he can walk. It will make things a lot easier. I want to thank Angel Reese’s mommy for being so patient with us and getting one wonderful picture. I will post it soon.
We had a great day on Sunday. We went church with my grandmother, Helen Byrd. Morris Chapel United Methodist in Walkertown, NC has done a tremendous job supporting our family through prayer and assistance over the last two years. We were invited to attend on Sunday and share our testimony. It was a blessing for me to be able to stand in front of God’s people and tell of the wonderful things that He has done in our lives.
I requested a conference with Morgan’s teachers so we met with them on Thursday. This meeting was very helpful to us because it gave us a better insight as to what Morgan is doing at school. She is having difficulty in a few areas. One of her areas of weakness is her listening skills. This may nor may not be a result of her hearing loss. She also has difficulty paying attention, again this could be a hearing thing. Morgan also lacks some social skills, but this was really not a surprise to us. Morgan is so excited to be around other children that she really has trouble controlling herself. She just cannot keep her hands to herself. She is never mean or aggressive, she is just thrilled to be back in the group. We have started the paperwork to have Morgan categorized as “Other Health Impaired”. She is already in the Exceptional Children’s department. She is now labeled as Speech and Language Impaired. OHI will allow her to receive more modifications in the classroom. There are several things we are going to try to help her succeed. First, Morgan will start wearing an FM system. This is a device that will help to drown out some of the background noise and allow the teacher’s voice to be the main focus of what she hears. Also, she will have another occupational therapy assessment through the schools. If she qualifies, she will receive more OT directed specifically at school skills. Morgan is also going to start meeting with the school counselor on a regular basis to help improve her social skills.
Friday, we had the pleasure of attending the Second Annual Morgan Barnes Golf Tournament. Jerry played in the event. Morgan, Holden and I arrived in time for Morgan to eat four bags of potato chips, go for a ride in a golf cart with Daddy, and watch prizes be given out. Just like last year, it was a huge success. Everyone seemed to have a great time. We would like to thank Jerry’s co-workers in the Public Heath Sciences Department at WFUBMC for putting this event together. Our family appreciates the hard work that was put into this golf tournament.
Morgan is busy sending us into one of our worried states regarding her health. She acts like she feels fine, but the last two mornings she has thrown up. This could be caused by a number of things, but of course Morgan cannot have a health issue without her parents (particularly me) worrying that it is a sign of something horrible. Please pray that these episodes will stop soon and are just a normal childhood thing.
The week ahead will be full of all the things that are keeping our family busy these days. We will have work, school, dance classes, Little Gym classes, and occupational therapy to fill our plates. Morgan also has an appointment with her orthopedist on Monday. It is time to take a look at that leg again and make sure it is still okay. The way she moves constantly is a pretty good indication that it is fine, but I guess Dr. Koman would like to see an x-ray of it just to verify that. After school gets out on Friday, we are heading to the Beach. Grandma and Paw-Paw have been at their condo in Cherry Grove, SC for the last two weeks and we are going to visit. We will come home on Sunday and on Labor Day, Morgan, Heather and I will depart for the Big Apple.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
NEW FUNDRAISING INFORMATION:
"SUNDAE SUNDAY"-A benefit concert will be held 3:00pm to 6:00pm, Sunday,
September 12th, on the Hope Moravian Church lawn. "New Mercy" and "Solid Rock" gospel quartets from King, NC, will be performing. Bring a blanket or your favorite lawn chair and prepare for an afternoon of great spiritual music, fellowship, and refreshments. Cake and ice cream with all the trimmings will be served. There will be no charge for the concert or refreshments. A donation box will be available for donations, with proceeds being divided between cancer patients Morgan Barnes and Kyle Neve, to help with their medical expenses. (Hope Moravian is located on in Winston-Salem. It is on Hope Church Rd., which is off of W. Clemmonsville Rd. (close to Stratford Rd. intersection).
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Friday, August 20, 2004
Hello Friends,
I cannot believe how quickly this week passed us by. It was very hectic and very tiring. I think I could sleep the entire weekend away.
Morgan is still adjusting to kindergarten. The discipline system in her class is proving to be a bit of a challenge to her. On Monday and Tuesday she came home with a note saying that her green card had been pulled. The kids have three cards on the board, green, yellow, and red. After being warned, students will lose the yellow card if they continue to misbehave. As a former teacher, I was mortified even though the teachers told us to expect kids to lose cards. I took her to school on Wednesday and asked if I should be concerned. The teacher told me that they really bare down on the kids during the first few weeks of school to make the school year easier on everyone. Wednesday was a good day and she kept all of her cards. On Thursday, she hit one of her classmates and therefore lost both her green and yellow cards. According to the teacher, Morgan is very social. She also like to touch people and mess with them when the class is in the hall. Morgan is pretty young compared to many of her classmates. In October, some of them will start turning 6. Sometimes I wonder if she is just not ready for this. I guess part of parenthood is second-guessing every decision that you make.
I probably should have had my green and yellow cards pulled last night in grad school. I have started the final class that I need in order to finish my Master’s degree in school counseling. I got to school last night and discovered that graduation applications were due today. I hurriedly got one and filled it out only to find that it needed to be signed by my advisor. My advisor was out of town and so was the department head, who also could have signed this piece of paper. I tracked down another professor who said she would only sign it if I had a copy of my transcript to prove that I had indeed met all of the graduation requirements. Luckily, I had one on me. All of this had me pretty flustered by the time I got to class. Then, I look at the syllabus and realize that this particular professor has a very strict attendance policy. It appears to me that I will not be able to pass the class due to having to take Morgan to New York for treatment. When, I asked the professor about it she really did not give me a straight answer. By the time the class was over I was in tears because it did not seem to me as if graduation was going to be an option for me in December. I stayed after class and I think that I got things resolved with the professor and I hope that she will understand my situation. But, now I am really nervous about things. I am going to discuss this situation with another faculty member just for my own piece of mind.
There were some good points to the week. Morgan started dance classes on Tuesday night. She was a bit frustrated at first because the studio had changed locations and Morgan is a creature of habit. But once things got started, she was fine. Holden started his gymnastics class at the Little Gym. He is just as wild as ever, but at least this time it is not a parent/child class so I did not have to chase after him the entire time. Jerry took a much deserved golf retreat with his co-workers. It was difficult on me to be solely responsible for the kids and all their activities, but he really did need to get out and do something socially.
The only medical thing Morgan did this week was a trip to occupational therapy on Wednesday. I am not really sure how it went. Morgan was very upset at the end of the session because the therapist would not allow Morgan to get an extra sticker for her brother. At this very moment, Morgan and her father are in her room having it out because Morgan does not want to do her occupational therapy homework. I am sure I will have to go intervene in a second.
I am going through one of those periods right now where everything seems to be a frustration. I know that it is temporary and overall my life is great right now. I am just anxious for things to settle down some. Knowing that another long trip to NY is right around the corner is only adding to the stress. But, I still wake up every morning thankful for all the wonderful blessings that the Lord has given me.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
NEW FUNDRAISING INFORMATION:
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Friday, August 13, 2004
Jerry posted some new pictures in the photo album that we used during Morgan's transplant. Click on the "Geocities" link at the bottom of the page to see pictures of Morgan's birthday tea party.
Hello Friends,
Morgan is officially a kindergartener now. And she loves it. Monday, we reported to Lewisville Elementary School for orientation. When we got there, we went to the cafeteria. The teachers came and got the students and took them to class. Morgan left my side without a single second of hesitation. The principal spoke to the parents and then Morgan’s teacher came back to meet with the parents while the teacher’s assistant worked with the kids. They had a staggered start day for kindergarten so only one third of the class was in attendance. After we met with the teacher, I walked into the classroom to snap a few pictures of Morgan on her first day of school. When I walked in she looked up at me and said, “Oh no Mommy, I can’t leave I am not finished with my coloring yet”. The class was reading a story about a raccoon who went to school for the first time and coloring raccoon pictures. I gave Morgan a kiss and left. As I was walking out of the school, I honestly did not know whether to laugh or cry. I wanted to laugh when I thought back to where we were on August 9, 2002. Morgan was in the hospital just finishing her first round of chemo. At that time, I was not sure kindergarten would ever be a reality for her. And, of course I wanted to cry because a stage of my parenthood has come to an end. My first child is no longer an infant, toddler, or preschooler. She is now a school-aged child. These other stages did not really come to an abrupt end like the preschool phase did. One just kind of drifted into the other. There was no ceremony such as the first day of school to announce the transition from infant to toddler. Starting school was a dramatic reminder that each and every year she growing more independent. I make my living working in the schools, I know just how quickly a school year passes. Soon, kindergarten will be another stage that has passed us by.
Holden also had a big day on Monday. It was his first day in the three-year-old class. The school did an excellent job preparing the children for their transitions and I don’t think many tears were shed. We had an Open House at the center on Monday night and the teachers are both fabulous. I think that both of my children are going to have a wonderful year in school.
The biggest change for Holden is the “no pull-ups” rule in his class. He now wears underwear except for nap time. You know that potty training has been an unpleasant topic around here. Let’s just say that I come home from Holden’s school each day with a rather large bag of clothes to come home and wash. Hopefully, it will only be a few more weeks until Holden accomplishes this. As I was typing this, he announced that he needed to potty. He has been sitting on his potty chair watching the opening ceremonies of the Olympics for the last 45 minutes. Nothing is happening, but I guess this should be considered progress.
Morgan did not have to go to school on Tuesday or Wednesday. Tuesday, she stayed with Grandma Vicky and Paw Paw while I worked. On Wednesday, she had an appointment with the occupational therapist. She loved it just like always. After that, we had a more unpleasant appointment. Morgan has started the process of getting re-immunized. She had to have five shots. I now know why they normally do that to infants. She was screaming and begging the nurse to stop. By the time it was over, I was crying, the nurses were crying, and of course Morgan was crying. I just know that the next time it is not going to be easy to convince Morgan to get out of the car when we arrive at the pediatrician’s office.
Morgan returned to school on Thursday. She had a good day. She goes to the after school daycare program for about an hour every afternoon. On Monday, she did not go to this program because I took the day off from work to get her started in kindergarten. I tried to explain to her what Thursday would be like, but of course she had no point of reference to base my words on. Well, on Thursday she thought that I had forgotten to pick her up. When they escorted her into the gym, she was crying. This broke my heart when I heard it. But, by the time I got to the school she was happily playing with the other children. When I picked her up today, the group was doing aerobics. The leader was in the front of the room instructing about 65 elementary students and Morgan was on the very front row “breaking it down”. She was having a blast and she was talking and interacting with the other children. I am so proud of her that my heart could just burst.
We have just under a month before we have to leave for New York. I am trying to enjoy every moment until that time. We are going to take it easy this weekend and resume our routines on Monday. Morgan gets to go back to dance class on Tuesday and Holden will start his classes at the Little Gym on Thursday. I am starting my last grad school class on Thursday. God has certainly blessed us. We are as busy as ever, but it is no longer a busy filled with trips to the hospital, blood transfusions, or visits from a home health nurse. We are doing the things that we imagined parenthood would be about. It is so awesome. I owe it all to God and the prayers that He has answered on behalf of our family.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
NEW FUNDRAISING INFORMATION:
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Friday, August 6, 2004
Hello Friends,
The last week has been fabulous for our family. We are still celebrating all of the good news that we received from Morgan’s most recent tests and scans. No evidence of disease – those words are so wonderful. God has blessed us richly and we give Him all the glory.
Life has been so normal around here. Morgan and Holden have been able to do lots of normal things. On Saturday, Morgan went to a birthday party at Build A Bear. This was her first Build A Bear experience. She had a great time. I arrived at the mall a few minutes before the party was over. The kids were gathered at the food court having cake. I snuck up the escalator and stood on the balcony watching Morgan from afar. She was so happy and enjoying herself so much.
Sunday was a big day for both of the kids. It was promotion day in Sunday school. Holden moved up to the three year old class. Morgan is now officially out of the preschool Sunday school program. She had her first experience in Children’s Church. This program is for school aged kids and is very dynamic. I knew that she was either going to love it or hate it. Some kids find it very overwhelming because it is loud and there is a lot of action. Morgan loved it. She had a great time. She has already memorized her memory verse for next Sunday. Jerry and I also reassumed our role in the Sunday school program. We have not had any duties since Morgan was diagnosed with cancer. We taught our first class in two years. We had the two year olds. They were so sweet and made things pretty easy on us. We learned a long time ago that it is easier to teach classes when our own children are not in the class.
I returned to work on Monday. I am working part time again. I love my job so I was thankful that it remained a part time position. If things go according to plans, I should finish my Masters Degree in December. It has only taken me six years to get it. But in my defense, I have had a very busy six years. I have had two children, moved, and changed jobs twice. I have also helped my daughter go through seven rounds of chemo, a bone marrow transplant, radiation, antibodies treatment, and countless other treatments.
Thursday, Morgan had occupational therapy. She did well again. The therapist did not notice Morgan having tremors like she did last time. It must have been due to muscle fatigue from working so hard. Morgan also had open house at Lewisville Elementary School on Thursday. I am still trying to come to the realization that she is going to be starting kindergarten on Monday. Morgan loved the classroom. She and her classmates had a nice time playing in the room. Morgan was not too sure of what to think of the teachers. She did not speak to either one of them. There was a lot going on. Monday, we will have kindergarten orientation and I hope she is friendlier then. She will not have her first full day of school until Thursday.
Today, Morgan had another hearing test. Believe it or not – her hearing has actually improved. The audiologist said that this does happen, but it is very rare. I believe that it is just another way the Lord has blessed us. Morgan has lost high frequency hearing in both ears. In her left ear, she previously had some loss within the normal hearing frequencies. Today, there was no evidence of that at all. She will not have to have any special accommodations in school due to hearing loss. God is good – all the time. Her next appointment to check her hearing will be in February.
We spent the afternoon shopping for back to school things. We decided to take advantage of North Carolina’s tax-free weekend. Morgan was not that happy about shopping and she was not very well behaved. But, she did manage to pick up a few cute outfits. Once we left the mall and got some food in her belly, her mood improved dramatically. She even volunteered to help us clean the house tonight during our Friday night cleaning ritual.
There are some big things coming up next week. Monday, Morgan will start kindergarten and Holden will be promoted to the three year old class in his preschool. Wednesday, Morgan has to see her regular pediatrician. We found out last week that she has the green light to go ahead and start the re-immunization process. I have not shared this info with her yet and probably won’t until the nurses walk into the room with syringes in hand.
Prayer Requests:
1) Ask the Lord to never again allow cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
NEW FUNDRAISING INFORMATION:
Our wonderful neighbors are sponsoring an event for Morgan. It is called Donate Dough and Down a Dessert for Morgan. It is going to be held in the cul-de-sac directly across the street from our house on September 18 at 7:00. They will have many different desserts to choose from, including the delicious "Chocolate Dream" donated by Carrabba's. There will also be a silent auction with some great items and lots of fun activities for the kids! Advance tickets will be $4 for individuals/ $10 for families (quite a bargain!) and tickets at the event will be $5 for individuals/$12 for families. All of the proceeds will go to Morgan! If you are willing to donate a dessert, or two...and/or items for the silent auction, please email me and I will give you contact information.
God Bless,
Allison
Friday, July 30, 2004
AUGUST 4, 2004
Dr. Kushner just called. Morgan's bone marrows looked good. Praise the Lord. Please take some time to say a quick prayer of thanks to Him and ask that Morgan would always remain cancer free. Thanks so much for your support and prayers. I will do an update on Friday.
NEW PICTURES HAVE BEEN ADDED TO THE PHOTO PAGE!
Hello Friends,
What a trip! We are so thankful to be home. It seems as if lots of little things kept going wrong. But, in the end it all turned out well.
On Monday, I called the Ronald McDonald House to confirm that we had a room. They told me that they had seven people trying to check in and only two rooms available. I would have to call back later to see if I got one of those two rooms. I am the type of person who likes to have all my plans made well in advance. So, the thought of showing up in New York at 9:00 pm and not having a room did not sit very well with me. I called a hotel – they were booked solid. I called a second hotel – they were booked solid. I called a third hotel – they had one room left. At this point, I was in a near panic state so I booked the room. As you can imagine hotel rooms in New York City are not cheap, but I needed peace of mind that when we got to New York we would not be frantically searching for a room. The RM House charges $20 per night. I am now seriously hoping that we never again have to stay in a hotel because while the accommodations were great, we could definitely not afford to do that for one of our two week stays.
The flights to New York were uneventful this time (Praise the Lord) and we arrived late Monday night. We checked into our hotel room, had a late dinner, and ended up bedding down close to midnight. This was okay, since we did not have to be at clinic until noon on Tuesday. Tuesday was a fairly simple day. We checked in at clinic and did the usual waiting thing. Morgan loved it because she got to play in the playroom. When she is in NY for treatment, she is never able to go to the playroom because it is closed when she starts treatment and then after treatment she is in no condition to play. Morgan was checked out by a nurse practitioner, had her central line accessed, and had labs drawn. Then, we went downstairs to Nuclear Medicine where she had her MIBG injection to prepare for her scan on the following day.
Wednesday was a tad more difficult. Morgan has to be sedated for her scans because she absolutely refuses to hold still. Morgan is the type of child who moves simply because someone is asking her not to. Case in point, Morgan had to be weighed Tuesday at clinic. She absolutely refused to get on the scale. This is something that she has done countless times, but on this particular occasion she said, “NO!”. We finally got a weight on her, and then she refused to stand straight so we could see how tall she is. This was a much bigger ordeal than it should have been and provided proof to me that traveling 800 miles to get a scan and depending on Morgan to cooperate was not a good idea. Therefore, Morgan has to be sedated for her scans.
The MIBG scan was scheduled for 2:00. Morgan could have no food after 7:00 am and nothing to drink after 10:00 am. Considering that she did not wake up until 9:00, she did not eat or drink very much before the scan. She only complained once that she was hungry. The scan started right on time and only took about 90 minutes to complete. Morgan woke up angry, as she typically does following sedation. It took her an hour or so to calm down. Then, we went and got supper and prepared ourselves for the next set of test.
Thursday proved to be a very difficult day. When we were given the testing schedule, we were told that the CT scan would be at 10:00 and the bone marrow aspirations / biopsies would follow. When we arrived at clinic on Tuesday, the said the CT scan would be at 11:30. I did not think much of this because I knew that neither procedure would take long and we would be able to make our 6:00 flight out with no problem. We arrived at clinic at 9:30 am, just like we were told to do. Morgan saw the doctor to be cleared for sedation and we signed the necessary consent forms to have bone marrow withdrawn from her body. With the MIBG scan, Morgan had conscious sedation. This means a nurse put her under with benedryl and pentobarbital. Since the bone marrow tap is like surgery, an anesthesiologist had to fully sedate her. At 11:30, they told us to go down to the CT department that there was a slight delay. We arrived at 11:30 and were told that at 12:00, the anesthesiologist would be there to get things started. At 12:00, we were still waiting. I must say that Morgan was doing very well. She was hungry and asking for food, but she was not pitching one of those fits that I know she is capable of. At 12:15, we were told that someone would be out to speak with us shortly. At 12:30, we were told that someone would be out to speak with us shortly. At 12:40, the head of the CT department came out and pulled me into a room to speak with me. It seems as if there was a delay with the anesthesia team and they should arrive at 1:00. Scan time is a very emotional time and at this point I had about had it. I started crying telling the lady that I was not happy with the way my child had been treated. She had been without food since midnight the night before and was starving. Morgan could not understand why I would not let her eat. I really had no intention of being so emotional, it just happened.
At 1:00, we were still waiting. Morgan was getting hungrier and hungrier. She was also getting louder and louder. I did not even try to get her quiet, I figured that she had every reason in the world to be frustrated. I know I was. A few minutes after 1:00, a patient services representative comes in to talk to us. This time, I was still being emotional and in tears while Jerry was doing a very good job of letting them know just how frustrated we were. Not only were we concerned that Morgan was starving, but we also had a plane to catch. The anesthesiologist finally showed up at 1:20. He apologized and said that he had some tough cases before us. We knew that it was not his fault. We feel that fault lies with the entire anesthesia department and how things are scheduled. Each day, only one anesthesiologist is assigned to pediatrics. This means that if something runs long, everyone else has to wait. The does not seem very efficient to me.
The CT scan was finally started at 1:40. It only took a few minutes and then we were wheeled upstairs for the bone marrow procedure. This only took a few minutes too. Morgan came out of her sedated state around 2:30 and we were headed out on the street to get a taxi to head to the airport. As you know, Morgan does not come out of sedation well so she was very angry and not ready to get into a taxi. We were by no means running late. But, we did feel like we were running behind schedule. A very nice cab driver heard Morgan screaming and must have felt some compassion for us. He did an illegal u-turn in order to pick us up. The poor guy had no idea what he was getting himself into. This is where the story gets interesting.
Morgan was screaming and voicing displeasure I scooped her up out of the stroller and managed to get in the cab. I am sure the taxi driver’s eardrums were about to burst. As I am breaking down the stroller, I noticed that my husband had jumped into the cab and closed the door, leaving the stroller and both suitcases on the sidewalk. I cuss him under my breath as I load everything into the trunk. I could not imagine why my husband, who is always a gentleman when it comes to lifting and such, had left everything for me to load into the taxi. When I got into the backseat of the car, boy was it a spectacle. Morgan was doing her typical narcotic routine and Jerry was also writhing in pain. It turns out the he pulled something in his back as he was hurriedly trying to put suitcases into the car. Then, Morgan decides that she has to potty. Now, throw that into the mix and what a scene it was. I felt sorry for the cab driver and I am certain that he was regretting making that u-turn. I just knew that Morgan was not going to be able to hold it so on top of everything else we would leave him with pee in his backseat. As we crossed the Triboro Bridge, I almost wanted to jump off of it.
We managed to make it to the airport. Jerry is in so much pain when we arrived that he has to lay down on the sidewalk at LaGuardia. Morgan is still crying and I am very frazzled. The cab driver helps with the luggage and I give him a very nice tip. I get Morgan in the stroller and Jerry to his feet and try to head into the airport. Jerry is in agony and can do nothing to help me. I managed a stroller and two suitcases into the airport and deal with Morgan while he sits. Then I find a bathroom for Morgan and he sits. Then I get us checked in and he sits. Then I take our bags to security and he sits. We get to Burger Kind in the airport while I get our food and he sits. I honestly thought I was going to have to get him a wheelchair. He was in so much pain. Morgan fortunately calmed down after we got food into her.
We made it onto the plane and I got Morgan’s coloring book out for her. As she was coloring, I looked down at her hand and noticed that she had a nasty looking, puss-filled sore on her thumb. Morgan bites and picks at hang nails. Apparently, one had become infected. I knew that this would have to be checked out by a doctor.
We arrived home around midnight. We were all tired and Jerry was still in quite a bit of pain. This morning, I took both of my little patients to the doctor. Morgan has an infected hang nail and had to start an antibiotic. Jerry has a pulled muscle in his back and has been put on a variety of painkillers and muscle relaxers. Morgan’s thumb already looks better and at least Jerry is able to walk now. He can’t do much else, but the pain is not quite as great as it was earlier. I may go crazy without his help and I must admit that I am not a very good nurse when it comes to helping him. He has told me many times that I do not have any compassion.
By the way, we were sitting here this afternoon and the phone rang. I saw on the caller ID that it was MSKCC. I immediately started crying because the only time Dr. Kushner has ever called me was to give me the bad news that Morgan still had cancer in her bone marrow in April 2003. I felt a little bit better when I heard his secretary’s voice on the other end. She said that Dr. Kushner tried to call us last night at the RM House and tried to email us. He wanted her to call with the good news. Morgan’s MIBG scan and CT scan showed no evidence of neuroblastoma. My tears quickly turned into tears of joy and I was sobbing when I hung up the phone. Jerry and the kids were distressed due to my tears but we all celebrated when I was finally calm enough to convey the good news. We are still waiting for the results of the bone marrow tests to come in but so far the news is terrific. PRAISE BE TO GOD!
Thanks so much to everyone who prayed for us during this difficult trip. The trip had its share of hardships, but I will take that kind of stuff any day when they are accompanied by good news. We also found out that Morgan is still HAMA negative. This means that we will return to NY in September for her TENTH cycle of antibodies.
Two years ago tomorrow (July 31) Morgan was diagnosed with Stage IV Neuroblastoma. Today, she is doing terrific. God is good – all the time.
I am sorry that this update became so wordy.
Prayer Requests:
1) Ask the Lord to never again all cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Friday, July 30, 2004
Hello Friends,
What a trip! We are so thankful to be home. It seems as if lots of little things kept going wrong. But, in the end it all turned out well.
On Monday, I called the Ronald McDonald House to confirm that we had a room. They told me that they had seven people trying to check in and only two rooms available. I would have to call back later to see if I got one of those two rooms. I am the type of person who likes to have all my plans made well in advance. So, the thought of showing up in New York at 9:00 pm and not having a room did not sit very well with me. I called a hotel – they were booked solid. I called a second hotel – they were booked solid. I called a third hotel – they had one room left. At this point, I was in a near panic state so I booked the room. As you can imagine hotel rooms in New York City are not cheap, but I needed peace of mind that when we got to New York we would not be frantically searching for a room. The RM House charges $20 per night. I am now seriously hoping that we never again have to stay in a hotel because while the accommodations were great, we could definitely not afford to do that for one of our two week stays.
The flights to New York were uneventful this time (Praise the Lord) and we arrived late Monday night. We checked into our hotel room, had a late dinner, and ended up bedding down close to midnight. This was okay, since we did not have to be at clinic until noon on Tuesday. Tuesday was a fairly simple day. We checked in at clinic and did the usual waiting thing. Morgan loved it because she got to play in the playroom. When she is in NY for treatment, she is never able to go to the playroom because it is closed when she starts treatment and then after treatment she is in no condition to play. Morgan was checked out by a nurse practitioner, had her central line accessed, and had labs drawn. Then, we went downstairs to Nuclear Medicine where she had her MIBG injection to prepare for her scan on the following day.
Wednesday was a tad more difficult. Morgan has to be sedated for her scans because she absolutely refuses to hold still. Morgan is the type of child who moves simply because someone is asking her not to. Case in point, Morgan had to be weighed Tuesday at clinic. She absolutely refused to get on the scale. This is something that she has done countless times, but on this particular occasion she said, “NO!”. We finally got a weight on her, and then she refused to stand straight so we could see how tall she is. This was a much bigger ordeal than it should have been and provided proof to me that traveling 800 miles to get a scan and depending on Morgan to cooperate was not a good idea. Therefore, Morgan has to be sedated for her scans.
The MIBG scan was scheduled for 2:00. Morgan could have no food after 7:00 am and nothing to drink after 10:00 am. Considering that she did not wake up until 9:00, she did not eat or drink very much before the scan. She only complained once that she was hungry. The scan started right on time and only took about 90 minutes to complete. Morgan woke up angry, as she typically does following sedation. It took her an hour or so to calm down. Then, we went and got supper and prepared ourselves for the next set of test.
Thursday proved to be a very difficult day. When we were given the testing schedule, we were told that the CT scan would be at 10:00 and the bone marrow aspirations / biopsies would follow. When we arrived at clinic on Tuesday, the said the CT scan would be at 11:30. I did not think much of this because I knew that neither procedure would take long and we would be able to make our 6:00 flight out with no problem. We arrived at clinic at 9:30 am, just like we were told to do. Morgan saw the doctor to be cleared for sedation and we signed the necessary consent forms to have bone marrow withdrawn from her body. With the MIBG scan, Morgan had conscious sedation. This means a nurse put her under with benedryl and pentobarbital. Since the bone marrow tap is like surgery, an anesthesiologist had to fully sedate her. At 11:30, they told us to go down to the CT department that there was a slight delay. We arrived at 11:30 and were told that at 12:00, the anesthesiologist would be there to get things started. At 12:00, we were still waiting. I must say that Morgan was doing very well. She was hungry and asking for food, but she was not pitching one of those fits that I know she is capable of. At 12:15, we were told that someone would be out to speak with us shortly. At 12:30, we were told that someone would be out to speak with us shortly. At 12:40, the head of the CT department came out and pulled me into a room to speak with me. It seems as if there was a delay with the anesthesia team and they should arrive at 1:00. Scan time is a very emotional time and at this point I had about had it. I started crying telling the lady that I was not happy with the way my child had been treated. She had been without food since midnight the night before and was starving. Morgan could not understand why I would not let her eat. I really had no intention of being so emotional, it just happened.
At 1:00, we were still waiting. Morgan was getting hungrier and hungrier. She was also getting louder and louder. I did not even try to get her quiet, I figured that she had every reason in the world to be frustrated. I know I was. A few minutes after 1:00, a patient services representative comes in to talk to us. This time, I was still being emotional and in tears while Jerry was doing a very good job of letting them know just how frustrated we were. Not only were we concerned that Morgan was starving, but we also had a plane to catch. The anesthesiologist finally showed up at 1:20. He apologized and said that he had some tough cases before us. We knew that it was not his fault. We feel that fault lies with the entire anesthesia department and how things are scheduled. Each day, only one anesthesiologist is assigned to pediatrics. This means that if something runs long, everyone else has to wait. The does not seem very efficient to me.
The CT scan was finally started at 1:40. It only took a few minutes and then we were wheeled upstairs for the bone marrow procedure. This only took a few minutes too. Morgan came out of her sedated state around 2:30 and we were headed out on the street to get a taxi to head to the airport. As you know, Morgan does not come out of sedation well so she was very angry and not ready to get into a taxi. We were by no means running late. But, we did feel like we were running behind schedule. A very nice cab driver heard Morgan screaming and must have felt some compassion for us. He did an illegal u-turn in order to pick us up. The poor guy had no idea what he was getting himself into. This is where the story gets interesting.
Morgan was screaming and voicing displeasure I scooped her up out of the stroller and managed to get in the cab. I am sure the taxi driver’s eardrums were about to burst. As I am breaking down the stroller, I noticed that my husband had jumped into the cab and closed the door, leaving the stroller and both suitcases on the sidewalk. I cuss him under my breath as I load everything into the trunk. I could not imagine why my husband, who is always a gentleman when it comes to lifting and such, had left everything for me to load into the taxi. When I got into the backseat of the car, boy was it a spectacle. Morgan was doing her typical narcotic routine and Jerry was also writhing in pain. It turns out the he pulled something in his back as he was hurriedly trying to put suitcases into the car. Then, Morgan decides that she has to potty. Now, throw that into the mix and what a scene it was. I felt sorry for the cab driver and I am certain that he was regretting making that u-turn. I just knew that Morgan was not going to be able to hold it so on top of everything else we would leave him with pee in his backseat. As we crossed the Triboro Bridge, I almost wanted to jump off of it.
We managed to make it to the airport. Jerry is in so much pain when we arrived that he has to lay down on the sidewalk at LaGuardia. Morgan is still crying and I am very frazzled. The cab driver helps with the luggage and I give him a very nice tip. I get Morgan in the stroller and Jerry to his feet and try to head into the airport. Jerry is in agony and can do nothing to help me. I managed a stroller and two suitcases into the airport and deal with Morgan while he sits. Then I find a bathroom for Morgan and he sits. Then I get us checked in and he sits. Then I take our bags to security and he sits. We get to Burger Kind in the airport while I get our food and he sits. I honestly thought I was going to have to get him a wheelchair. He was in so much pain. Morgan fortunately calmed down after we got food into her.
We made it onto the plane and I got Morgan’s coloring book out for her. As she was coloring, I looked down at her hand and noticed that she had a nasty looking, puss-filled sore on her thumb. Morgan bites and picks at hang nails. Apparently, one had become infected. I knew that this would have to be checked out by a doctor.
We arrived home around midnight. We were all tired and Jerry was still in quite a bit of pain. This morning, I took both of my little patients to the doctor. Morgan has an infected hang nail and had to start an antibiotic. Jerry has a pulled muscle in his back and has been put on a variety of painkillers and muscle relaxers. Morgan’s thumb already looks better and at least Jerry is able to walk now. He can’t do much else, but the pain is not quite as great as it was earlier. I may go crazy without his help and I must admit that I am not a very good nurse when it comes to helping him. He has told me many times that I do not have any compassion.
By the way, we were sitting here this afternoon and the phone rang. I saw on the caller ID that it was MSKCC. I immediately started crying because the only time Dr. Kushner has ever called me was to give me the bad news that Morgan still had cancer in her bone marrow in April 2003. I felt a little bit better when I heard his secretary’s voice on the other end. She said that Dr. Kushner tried to call us last night at the RM House and tried to email us. He wanted her to call with the good news. Morgan’s MIBG scan and CT scan showed no evidence of neuroblastoma. My tears quickly turned into tears of joy and I was sobbing when I hung up the phone. Jerry and the kids were distressed due to my tears but we all celebrated when I was finally calm enough to convey the good news. We are still waiting for the results of the bone marrow tests to come in but so far the news is terrific. PRAISE BE TO GOD!
Thanks so much to everyone who prayed for us during this difficult trip. The trip had its share of hardships, but I will take that kind of stuff any day when they are accompanied by good news. We also found out that Morgan is still HAMA negative. This means that we will return to NY in September for her TENTH cycle of antibodies.
Two years ago tomorrow (July 31) Morgan was diagnosed with Stage IV Neuroblastoma. Today, she is doing terrific. God is good – all the time.
I am sorry that this update became so wordy.
Prayer Requests:
1) Ask the Lord to never again all cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Sunday, July 25, 2004
Hello Friends,
Happy Birthday Morgan!
Five years ago today, I became a mother. The journey has not been exactly what I thought it would be. I was never under the delusion that it would be easy. I just had no idea of how hard it would be. I was naïve enough to think that when they handed me a beautiful child with an APGAR score of 8 that I had a healthy child. I had no idea that a horrible beast was growing inside her body and that in three short years our lives would be turned completely askew.
I have shed many tears during the last five years. But, I have also been blessed beyond measure. I have a strong network of family members and friends who support me in every way imaginable. I have a great husband who is an exceptional father. I have two beautiful children who are loving, smart, and at this moment healthy. I have been taught a valuable lesson in the power of prayer and the immense love that God has for us all. In the early days of Morgan’s diagnosis, I just kept waiting for someone to walk into the room and tell me that a mistake had been made and everything was going to be okay. I never had that. But, I did receive a message from God to trust him and He would take me through this journey. The trusting part is not always easy. I still have a lot of fears. These scans still loom over my head like a consuming fog. Morgan is in His hands and I must rely on Him.
Morgan is very excited to be five years old. The tea party was a complete success. It was even more fun than I thought it would be. Our party hostess, Miss Alice, is a devout Christian and member of Reynolda Presbyterian Church. Reynolda is the church that planted our church, River Oaks. After the tea party was over, Miss Alice prayed with me for Morgan. Morgan’s favorite part of the party was putting on lipstick. My favorite part was the prayer and witnessing Morgan having a wonderful time playing with other little girls.
In about an hour, our home will be filled with family members who have come to wish Morgan a happy birthday. This is a tremendous celebration for our family. And, it is our sincere prayer that our Little Princess has at least 75 or more birthdays. We pray that she will be allowed to live a full and complete life in His glory.
We will depart for New York tomorrow afternoon. Tuesday, Morgan will get an injection of radioactive isotopes (MIBG). Wednesday, she will have the MIBG scan at 2:15. Thursday, she will be a CT scan and bone marrow biopsies and aspirations at 10:00. We are due to fly home Thursday night and should return to Greensboro around 11:00. Hopefully, our flight will not be nearly as exciting as our flight home on July 9. I will do another update after the test results are in. Please pray for nothing but good news.
My dear friend, Heather, is arranging a prayer vigil for us while we are in New York. We would like to have both days of Morgan’s testing to be covered in prayer. She did this for us the last time we went to New York for scans and I can honestly say that we could feel it. The prayer vigil will start at 6:00 am on July 28 and will last until 5:00 pm on July 29. If you are interested in taking a block of time, please email her at: hmcleod@bbandt.com.
Prayer Requests:
1) Ask the Lord to never again all cancer to grow in Morgan’s body..
2) Pray for the Lord to bless our upcoming trip to NY. Ask Him to keep us safe and to protect Holden while we are away from him.
3) Pray that all of Morgan’s upcoming scans and tests will show no evidence of disease.
4) And please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Thursday, July 22, 2004
Hello Friends,
I cannot believe I have waited this long to do an update. I have my usual excuses – we have been busy. This time, we have been busy getting ready for the Little Princess’ birthday. Morgan Grace Barnes will officially turn five on Sunday, July 25. Where have the last five years gone? Major parts of the last two have been spent at clinics and hospitals, but I am oh so thankful for that. Without those places, she would not be celebrating a birthday.
On the medical front, there really is not that much to report. Last week, Morgan had a dental appointment. Things really have not changed much in that department in the last six months. She still hates going, but at least this time they were able to get x-rays on her and she did not have to be strapped to the dental chair. That seems like progress to me. She still has one small cavity in the back left side of her mouth. It is still small and insignificant enough that they do not want to fill it yet. The dentist said that she would check it again in six months. It will have to be filled eventually, but she would like to wait until these visits are not as traumatic for Morgan. The dentist wants to avoid having to sedate Morgan in order to do the dental work. I am all for that. We are pretty fortunate in this department. Chemo and radiation can be very hard on kids’ teeth. Morgan is very blessed to not have much more extensive damage.
Today Morgan had her regular oncology clinic visit. They drew blood and she had a physical. We did not wait around for her counts to come back, but obviously they are okay because no one called us to tell us otherwise. They also drew a vial to send to New York for HAMA testing. We will get the results next week while we are there. There is nothing exciting to report about Morgan’s physical (Praise the Lord). The highlight of the visit was that Morgan got to get a prize out of the birthday closet. Our next visit is scheduled for September 30 (nice break, huh?) and that is my birthday. I bet they do not let me go into the birthday closet to get my prize. But, as long as Morgan and Holden are still healthy on September 30 I will have my prize.
Morgan also went to occupational therapy. It has been a while since she has been able to go. We were on vacation one week, in New York the next two, and the therapist was on vacation the next week. Morgan still loves it. The therapist said Morgan worked really hard today and did well. She was a bit concerned about the tremor in Morgan’s arm while she was using scissors. Cutting was one of the last things they did and the therapist hopes that it was due to muscle fatigue. Yeah, me too! I have not noticed anything like that before or after this appointment. Of course, now that the therapist pointed it out to me I have been watching Morgan like a hawk.
On Saturday, Morgan is having a tea party to celebrate turning five. It is for girls only (except Daddy) and involves a manners lesson, dressing up, pictures, and of course tea, sandwiches and cake. Morgan is very excited. On Sunday, we are having a family pizza party at our house. She keeps telling me that we are going to Chuck E Cheese too, but I am trying to figure out how we are going to work that in since we are flying to New York on Monday night.
And that brings us to the not so fun part of our agenda – scan time. It is once again time for that little bit of terror in our lives. Jerry and I stay on pins and needles when scan time is approaching a continually worry about every little thing we see Morgan do. Is she too pale? Does she have dark circles under her eyes? Is there something to this tremor that the occupational therapist saw? A few days ago she complained of a headache, which really helped to make things tense around here. We totally forget the fact that for the most part Morgan looks and acts like she feels great. She is eating well and has a surplus amount of energy. Please pray for all of us. Satan works really hard trying to convince us that Morgan cannot be healed.
My dear friend, Heather, is arranging a prayer vigil for us while we are in New York. We would like to have both days of Morgan’s testing to be covered in prayer. She did this for us the last time we went to New York for scans and I can honestly say that we could feel it. The prayer vigil will start at 6:00 am on July 28 and will last until 5:00 pm on July 29. If you are interested in taking a block of time, please email her at: hmcleod@bbandt.com.
Prayer Requests:
1) Ask the Lord to never again all cancer to grow in Morgan’s body..
2) Pray for the Lord to bless our upcoming trip to NY. Ask Him to keep us safe and to protect Holden while we are away from him.
3) Pray that all of Morgan’s upcoming scans and tests will show no evidence of disease.
4) And please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Saturday, July 10, 2004
Hello Friends,
We are finally hone. I want to personally thank all of you who prayed that we would have a safe trip home. It turns out that those prayers were very much needed and we had a very scary flight home last night.
Our plane was scheduled to leave NY at 8:05. It was not a very full flight so it was loaded up pretty quickly. The pilot came over the speaker and told us that we would get back from the gate a little bit early and should arrive in Greensboro in about an hour and seventeen minutes. We started to taxi and then we stopped. We sat for a long time. All of you who fly a lot know that when you sit for a while, obviously there is something going on. The pilot came back over the intercom and announced that some adjustments needed to be made and we were pulling back into the gate. I leaned over and told Debbie that I had never been on one that they had to pull back into the gate before. This comment was met by nervous laughter. A maintenance man got on the plane and wrote some things down. We sat for another 15 minutes and then the pilot decided to try again. This time, we got in line behind 15 other planes so we had to wait a while before it was our turn to take off.
We finally made it into the air about 45 minutes after our scheduled departure time. This was a little bit frustrating, but I was so thankful to be heading home. The flight attendant had just handed me my drink when the phone rang from the cockpit. She came back and got the cart and secured it. She announced for all of us to buckle our seatbelts and to put our tray tables up and if we had drinks to just put them somewhere. Then, the plane took a nose dive. I honestly thought we were crashing. It was not a good feeling. We dropped about 18,000 feet in less than thirty seconds. Morgan had no idea what was going on. In fact, she was very upset because the flight attendant did not give her a Sprite.
The cockpit phone rings again. This time, the flight attendant announces that the captain has requested that she review all emergency procedures with us. There was a mechanical problem with the plane and she wanted us to review our safety information cards. I heard everything she was saying, but comprehended nothing. It was like I was in some sort of daze. I was honestly sitting there trying to remember where the exits were because I had heard that when you get on a plane you should count the number of seats from your seat to the exit, just in case you need to make an exit and don't have the ability to see. I could not even count them and there were less than five seats from us to the emergency exit. It was a very strange feeling to think that my life could be over in a matter of minutes. Of course, I was also trying to figure out what I needed to do to shield Morgan. She was first and foremost on my mind and I was upset about the fact that she had to be placed in this situation. Was she going to survive two years worth of cancer treatment in order to be killed in a plane crash?
After what seemed like a long time but was probably only a few minutes, the captain announced that he had things stable but he was going to have to make an emergency landing in Baltimore. He told us that there were problems with cabin pressure and they plane was not going to make it to Greensboro. We ended up landing at Dulles in Washington, DC. We stayed there for over two hours while various people examined and fixed the plane. The captain told us that the plane had developed a slow leak and cabin pressure had dropped and it was necessary to get under 10,000 feet in order to avoid crashing. This is why we had to take that sudden nose dive.
At first, I was adamant that I was not going to fly home and I certainly was not going home on the same plane that was having problems. I wanted to rent a car and drive home. But, after allowing myself to think rationally I realized that trying to drive home would be far more dangerous because Debbie and I were both too tired to try to drive home. Plus, all the rental car places were closed. Dulles was basically closed. There were very few flights going in and out at this hour.
We ended up flying home on that same plane. It was safe as long as we stayed under 8,000 feet. They did not fix the pressure problem but when you are under 8,000 feet it does not matter. It took just over an hour to fly to Greensboro from Washington, DC. We got home around 1:00 this morning.
Right now, I am typing this update as my wonderful husband cooks breakfast. My kids are happily playing and watching the video we made from our trip to Orlando. After all the hardships from the last two weeks. life is perfect right now. Thanks for holding us up in your prayers. I know that Lord brought our plane down saftely in DC last night.
Prayer Requests:
1) Praise God for delivering us safely to North Carolina after a very scary plane ride.
2) Pray for the Lord's continue blessings on Morgan's health. Ask Him to protect her and to never again to allow cancerous cells to grow in her body.
3) Ask the Lord to bless Morgan's upcoming scans and tests. Ask Him to reveal to us that she is still totally healthy and that there is no evidence of neuroblastoma anywhere in her body.
4) Please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Friday, July 9, 2004
Hello Friends,
I am back. I just needed to take a few days off after my last journal entry. It felt very good to write it, but I knew that I needed to just let that entry set for a few days and allow myself to absorb it. I am a person who thrives when I am in control. I like things to just flow along without any curves in the road. Cancer was a huge curve for my family. Sometimes it is hard for me to admit that I have feelings of bitterness, anger, and frustration. But, I am also a person who has a lot of hope and faith that the Lord has removed cancer from Morgan's body forever. I know that there is power in prayer but I think back to when this journey started and I thought that praying for healing would mean a quick snap of God's fingers and then instant healing. It did not happen that way. It has been a long and very difficult journey. But, honestly maybe I would not have such an admiration for God's healing power if the whole thing would have happened suddenly. It is often in the midst of tragedy and frustration that we feel walk holding us the closest to Him. This journey is not over and I have no idea where it will end, but I know that my Lord will carry me through the most difficult parts.
I truly appreciate all the kind words that were written in Morgan's guestbook. They helped to renew my faith and let me know that I need not feel so alone in this journey. My family has been there for me through it all. Sometimes I think that maybe it is more difficult for Morgan's grandparents because not only do they have to sit back and watch their granddaughter suffer but they have to watch their own children, Jerry and myself, go through such despair. Any parent knows that witnessing a child go through difficult moments is truly agonizing. It does not matter if that child is 4 or 34. My dear friends have also supported me in unimaginable ways. I think back to how life was in August of 2002 when my friends were cooking meals, cleaning my home, and taking care of Holden. I knew that all of the everyday tasks were taken care of so I could focus on the task of taking care of Morgan. I have also met so many new friends along the way who now feel like family. There are so many people who are watching their children go through the same struggles. The kind words of those dear souls mean so much. I have said this before, but when you child is diagnosed with cancer it is like you are automatically the member of this club. It is a club that no one wants to join, but once you are in it you realize that you are dependent on those other members just to make it through the day sometimes. And finally, all of those people who used to be strangers but now follow Morgan's site. Sometimes the words of people I have never even met can set on my heart for days. I know that Morgan is being prayed for my so many people and that is truly a gift from the Lord. Thanks so much to all of you.
Wednesday was not really much better for Morgan than Tuesday. But, praise the Lord she did much better yesterday and today. The Lord certianly heard your prayers to help make things easier on us. Today, she only needed one dose of pain medication. She developed a nice case of hives there at the end of the treatment, but it quickly resolved. I do not think she is HAMA positive yet. I wish she was, but I have turned it over to the Lord (at least I am working on this) and trying to stay confident in the fact that His treatment plan for her is perfect.
Morgan is very excited about the idea of going home tonight. Our bags are all packed and we will be heading to the airport in about three hours. The time at home will help me to get myself refreshed.
I post a message tonight or tomorrow to let everyone know that we arrived home safely.
Prayer Requests:
1) Pray for the Lord to protect us while we are traveling home.
2) Say a special prayer for Holden. Ask that all his needs be met and that he has all the comforts he needs while he has to be separated from his mommy and sister.
3) Pray for the Lord's continue blessings on Morgan's health. Ask Him to protect her and to never again to allow cancerous cells to grow in her body.
4) Ask the Lord to bless Morgan's upcoming scans and tests. Ask Him to reveal to us that she is still totally healthy and that there is no evidence of neuroblastoma anywhere in her body.
5) Ask for quick healing for my father's knee surgery.
6) Please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Tuesday, July 6, 2004
Hello Friends,
We had a very nice weekend. It was nice to have a few days off from clinic, although I felt like yesterday was a bit "wasted". I feel like every week day that we are here and Morgan is not receiving treatment is just an added day away from my family.
Friday night, we had a nice surprise. Debbie had some friends who were traveling to Boston. They came through New York so they stopped by the RM House to pay us a visit. We went on a ride with them just to see a few sites. We rode past Ground Zero and took a spin through Times Square. It is always nice to get away. Morgan was very tired and she fell asleep while we were on our little tour. On Saturday, we took advantage of the fact that we could sleep late. We had a nice breakfast at our favorite diner, The Three Star, and then walked up to 86th and 3rd to do some shopping. We had a relaxing day and then enjoyed a cook-out here at the RM House on Saturday night. On Sunday, we again had a Three Star breakfast and then relaxed. The NYPD sponsored an event for us for Independence Day. We had special seating right on the East River and they also provided dinner. It was very nice. The fireworks were absolutely unbelievable. The display was much larger than anything I have seen before. Yesterday, clinic was closed was we tried to take in some more sites. We took a cab to Pier 38 and took a boat ride around Manhattan. It started out okay. Then, Morgan got sick. I think it was a combination of the GMCSF that she takes (which causes nausea) and then just general sea sickness. Minutes after she threw up, a thunder storm set in. Fortunately, it was a short one. Morgan did not get off my lap for the duration of the three hour trip. At one point she sat up and threw up again. As soon as we stepped off the boat she seemed to recover. We came back to the RM House where she had a good supper and even played with her new friend, Carolyn, after dinner. Carolyn is also a neuroblastoma warrior.
I would like to say that today has been great. But, the truth is that today has been very bad. Morgan's treatment was fairly typical. It took them awhile to get things started so we were at clinic today for a long time. Morgan experienced her ususal amount of pain and needed two doses of diluadid to make it through. She did not want to leave the hospital so we went through that whole routine today. The worst thing about today is that she has not been able to get heself calmed down. We got back to the room around 1:00 and she has screameed and cried ever since. It is now 3:30. I was finally at the end of my rope so I walked out of the room. Debbie assured me that she had things under control so I came down here to do an update. I am hoping that Morgan will be calm when I return to the room, but I think that is wishful thinking.
I am going to vent now -- I am sick of this. I am sick of being away from my family. I am sick of watching my child suffer during these very painful treatments. I am sick of watching my child behave like an enraged beast after these treatments and having nothing in my power to console her. I am sick of the way people look at me when I walk up First Avenue with her screaming at the top of her lungs. Today it was so bad that I was just itching for someone to say something so that I could cuss them out. I already had my vicious words planned. I am sick of being bitter. I am sick of cancer. I am sick of seeing wonderful children taken by this horrible disease and wonderful parents being left behind to feel the void for the rest of their lives. I try to stay upbeat and tell myself that I should be thankful that Morgan is doing so well and that there are countless families who would give up everything to be in the position that I am in right now. But, then I think about all of you out there whom I envy. I envy all of you who have never had to hear that words that your child may not live to see adulthood. I envy all of you who have never had to wake up one morning in a hospital to find that your child's hair is laying on the pillow beside of their sleeping heads. I envy all of you who wake up every morning without the fear of upcoming scans and tests hanging over your heads causing an incurable headache. And while I do thank God for the healing that He has performed in Morgan's body I still question why it had to be my child? Often people tell me that they have learned so much about being a parent from watching me. Well to be honest, I would rather have been able to learn from someone else's example rather than being some role model of motherhood simply because I was put in a position where we had to fight with everything we had to save our child's life.
I hope that everyone understands what I have written and that it was more for my benefit than for any other reason. I had no idea that this journal entry was going to head in the direction that it ended up going in. But, it felt good for me to write it. I truly appreciate everyone who takes the time to stop by Morgan's site, to offer words of encouragement in the guestbook, and to continually lift our family up in prayer. As you can see, we still need lots of prayer.
Hopefully, tomorrow I will not feel quite so bitter and tomorrow's entry will be more uplifting.
Prayer Requests:
1) Pray for the Lord to protect us while we are away from home.
2) Say a special prayer for Holden. Ask that all his needs be met and that he has all the comforts he needs while he has to be separated from his mommy and sister.
3) Pray for the Lord's continue blessings on Morgan's health. Ask Him to protect her and to never again to allow cancerous cells to grow in her body.
4) Ask the Lord to bless Morgan's upcoming scans and tests. Ask Him to reveal to us that she is still totally healthy and that there is no evidence of neuroblastoma anywhere in her body.
5) Ask for quick healing for my father's knee surgery.
6) Please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Friday, July 2, 2004
Hello Friends,
Last night was definitely better for us than the first part of the day. The RM House sponsored a trip to Chelsea Piers to go bowling. It was a lot of fun. It was Morgan's first time bowling and she dearly loved it. It is something that we will have to do again once we return home. We also got the opportunity to see the Queen Mary 2 as she was leaving port last night. That was very exciting for Debbie and myself but a little less thrilling for Morgan.
Today's treatment was fairly routine. Morgan's pain was controlled with one dose of dilaudid. Her face broke out in hives today -- another sign that she is definitely not HAMA positive yet. I was hoping that this was going to be our last treatment. I guess that is still a possibility, but right now it seems pretty unlikely to me. I really wanted her to be finished with treatment before she starts kindergarten to avoid two week disruptions in her schooling. I am looking at this from a social aspect more so than an academic aspect. I do not want her to feel like she is left out of everything because she misses too much school. I know that the only two field trips her preschool class took she had to miss because we were in New York both times. I guess I am just pining for her life to be just that of an ordinary child. But, I will just keep praying about it and know in my heart that the Lord is providing Morgan with the perfect treatment plan. He will give her no more or no less than the exact number of treatments that she needs.
I am very happy that we have the first week of treatment behind us. We do not have any real plans for the weekend (other than try to sleep as late as possible). On Sunday, all the kids at the RM House get to go see the Macy's fireworks display. We will even be treated to a special seating section just for us. This should be fun, but I still think I would rather be watching the fireworks display at Lewisville's town square with my family.
Poor Holden was stung by a wasp three times yesterday. I talked to him on the phone about it yesterday and cried when he told me that, "bee hurt me." I told him I was very sorry that I was not there to kiss his boo-boo's for him. I miss him so much.
I hope that everyone has a very special Independence Day! Enjoy spending time with your family and friends.
Prayer Request:
1) Pray for the Lord to protect us while we are away from home.
2) Say a special prayer for Holden. Ask that all his needs be met and that he has all the comforts he needs while he has to be separated from his mommy and sister.
3) Pray for the Lord's continue blessings on Morgan's health. Ask Him to protect her and to never again to allow cancerous cells to grow in her body.
4) Ask the Lord to bless Morgan's upcoming scans and tests. Ask Him to reveal to us that she is still totally healthy and that there is no evidence of neuroblastoma anywhere in her body.
5) Ask for quick healing for my father's knee surgery.
6) Please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Thursday, July 1, 2004
Hello Friends,
Late update today -- Morgan has required my attention for most of the afternoon.
Morgan snapped out of her bad mood fairly quickly yesterday. She and Aunt Debbie walked down to St. Catherine's Park while I stayed in the room and finalized plans for our next trip to New York. That is right; I am not even home from this one and the reservations have already been made to fly back up here for the next one. Morgan's scans have been scheduled. Now, let the worrying begin. Morgan, Jerry and I will fly to New York on Monday, July 26 (our seventh anniversary). Morgan will have an MIBG injection on Tuesday, July 27. On July 28, she will have her bone marrow biopsy/aspirate and a CT scan. We will fly home that night and arrive in Greensboro around 11:00. Please pray hard that we get nothing but good news from all of these scans and tests.
Today's treatment was worse than yesterday's. Today she needed two doses of dilaudid to make it through. And she was a real pistol afterwards. Do I just forget how bad these drugs make her act because everytime she has one of her episoded I think that I have never seen anything like it? The poor child had that crazed animal look in her eye. She was screaming at me and even punched me a few times. She was in such an emotional state that she kept screaming at me telling me that I did not love her anymore. I sort of had one of those feel sorry for me days today. I started pondering the whole issue of "why my child". I have had these thoughts so many times over the last two years. Life is not fair; I certianly know that by now. I know God is with me throughout all of this, and I know that He allows me to question His motives. Someday I will understand . . .
Morgan never would fall asleep after treatment today. She wanted me to take her to St. Catherine's Park and I told her she had to rest first. She did not like this answer, but we finally came to an agreement. We decided that we would go to the park after she watched all five of the videos that she brought. I knew this would give her time to come down from her high. Every so often, she would drift off but she would never sleep more than five minutes. After we watched her videos, we set out for the park. We stayed about 30 minutes and then stopped and got a cone of icecream from the icecream truck. By the way, in New York City icecream trucks do not have to move. They just set up shop beside the park and stay for the day. Morgan is fine now. She is in the room playing with her Leap Pad. I am sure she will crash early tonight since she had a lot of narcotics today and no nap afterwards.
I am glad that tomorrow is the last day of treatment this week. I think we all need a break. We will get a long break too since there is no treatment on Monday due to the Fourth of July holiday.
Prayer Request:
1) Pray for the Lord to protect us while we are away from home.
2) Say a special prayer for Holden. Ask that all his needs be met and that he has all the comforts he needs while he has to be separated from his mommy and sister.
3) Pray for the Lord's continue blessings on Morgan's health. Ask Him to protect her and to never again to allow cancerous cells to grow in her body.
4) Ask the Lord to bless Morgan's upcoming scans and tests. Ask Him to reveal to us that she is still totally healthy and that there is no evidence of neuroblastoma anywhere in her body.
5) Ask for quick healing for my father's knee surgery.
6) Please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Wednesday, June 30, 2004
Hello Friends,
I guess yesterday's update put a jinx on us for today. Things did not go nearly as well today as they did yesterday. But, that is okay. We have another day behind us and we are one day closer to getting back home.
Last night, we went to another wonderful event sponsored by the RM House. They had a cook-out (up here they say barbecue) and some carnival games. Morgan won lots of prizes and I think she had a very good time. She still is only eating bread, but she has assured me that she will only be hungry again when she gets back home. I guess that is her way of a personal protest against coming to NY and getting these treatments. Maybe she is just pretending like she likes it here!?!
Today's treatment required one and a half doses of dilaudid. They made her crazy. She was very angry. She did not want to leave clinic and let everyone know. Then, she kept asking me these questions that I did not know the answer to and would get mad at me if I did not say word for word the thing she wanted me to say. It was very frustrating. She did things today that she has not done in quite a while. For example, she stood in front of the door and refused to allow either Debbie or myself to leave the room to check on the laundry. Also, she would not let me talk on the phone. Everytime I tried she would run over and take the phone out of my hand. One minute she would be balled up on my lap sobbing and the next minute she would be standing there screaming at me because I could not answer her questions about "Pocahontas", the movie she was watching correctly. It was very frustrating for all of us. She finally fell asleep which allowed me to come down to the computer lab to type this update. I am hoping that she takes a long nap and feel terrific when she wakes up.
I spoke with Mom and Dad earlier today. Dad's surgery went just fine. He is in some pain now, but otherwise he is doing okay. Hopefully, this will eventually alleviate all of the problems that he has had with his knee.
We are almost finished with the first week. I was confident after yesterday that Morgan was developing HAMA. Now, I am not so sure. But, it is in the Lord's hands and I know that He will provide the perfect treatment plan for her.
Prayer Request:
1) Pray for the Lord to protect us while we are away from home.
2) Say a special prayer for Holden. Ask that all his needs be met and that he has all the comforts he needs while he has to be separated from his mommy and sister.
3) Pray for the Lord's continue blessings on Morgan's health. Ask Him to protect her and to never again to allow cancerous cells to grow in her body.
4) Ask the Lord to bless Morgan's upcoming scans and tests. Ask Him to reveal to us that she is still totally healthy and that there is no evidence of neuroblastoma anywhere in her body.
5) Ask for quick healing for my father's knee surgery.
6) Please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Tuesday, June 29, 2004
Hello Friends --
Praise the Lord! I am pleased to report that things are great here in the Big Apple.
Yesterday, Morgan had a good nap after treatment. She woke up around 4:00 and was in a terrific mood. A bus came a picked us up and took us to a restaurant in the Bronx for dinner. It was a wonderful event. The restaurant was Joe's Place and they served Spanish cuisine. It was delicious and gift bags were provided for all of the children. This was a spectacular event. Morgan ate only bread (no surprise there) but she still seemed to enjoy herself.
Treatment today was one of the best days we have ever had. Morgan only needed one half of a dose of dilaudid to make it through. When it was time to leave, she started with her usual ramblings about not wanting to leave. She never got really loud. As we were walking up First Avenue, we started talking about all of the buildings and it turned into a very pleasant conversation. She watched a video after we got back to the room and then she wanted to go to her most favorite New York place, St. Catherine's Park. The weather here is quite nice so we had an enjoyable time at the park. After the park, she wanted to hit another one of her favorite spots, the pottery shop. Morgan painted a nice piece while Debbie and I just relaxed and watched. After she completed her masterpiece, we returned to the RM House. She is now in the room watching a video and chilling out for a bit. I hope all of the days of this treatment cycle go as smoothly as this one did. I am beginning to wonder if she is developing HAMA since she is not having a lot of pain. I personally think that it would be great to end treatment now because that would mean that she would not have to miss so many days of kindergarten. But, I feel confident that the Lord is going to give Morgan the exact number of treatments she needs to cure her forever. It is in His hands and I am very thankful for that.
I hope that I am able to update with another wonderful day tomorrow.
Prayer Request:
1) Pray for the Lord to protect us while we are away from home.
2) Say a special prayer for Holden. Ask that all his needs be met and that he has all the comforts he needs while he has to be separated from his mommy and sister.
3) Pray for the Lord's continue blessings on Morgan's health. Ask Him to protect her and to never again to allow cancerous cells to grow in her body.
4) Ask the Lord to bless Morgan's upcoming scans and tests. Ask Him to reveal to us that she is still totally healthy and that there is no evidence of neuroblastoma anywhere in her body.
5) Ask for quick healing for my father's knee surgery.
6) Please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Monday, June 28, 2004
Hello Friends,
The first day of treatment is officially behind us. We arrived in NY yesterday evening and were checked into our room by 6:00. We walked to the Three Star Diner for dinner. Morgan ate well and seemed to be happy to be back in New York City. She really loves this town. After supper, we stopped by the drug store and the corner market to pick up some supplies. Of course, Morgan had to have her favorite New York food -- a hard roll. She snacked on it right up until time to go to bed. In typical Morgan fashion, she declared she was ready to sleep around 9:30 and was fast asleep a few moments later.
Today was a long day at clinic, but the first Monday usually is. Treatment was very routine. Morgan had one and a half doses of dilaudid. I decided to start giving half doses rather than whole doses. This way Morgan feels like she is getting more medicine and it is easier for her to come down from the highs. Morgan's counts were all fine and so was her weight. We saw Dr. Kushner and discussed upcoming scans. I cannot believe that it is that time again already. Just thinking about it puts me into a nervous state. He suggested that we do them next week, but I still do not think that Morgan is capable of doing them without sedation. He reminded me that Morgan is older and I reminded him that he does not know Morgan that well. She is the kind of kid that would move on the table during scans simply because we asked her not to. She has always had a mind of her own and truthfully I know we will be able to obtain a decent scan if Morgan just sleeps right through them. Dr. Kushner's next suggestion was that we stay here a few extra days to get them done. I told him I would prefer to go home for a few days. We finally decided that we would aim for the last week of July. This will allow us to celebrate Morgan's birthday on July 25 before we have to start worrying about scans. But, just so you know. Morgan will be getting scanned around the end of July. Please start asking for prayers on her behalf. Please ask for the Lord to reveal no evidence of disease with these upcoming tests. And while you are praying, please remember my dad. He is having knee replacement surgery on Wednesday. Pray that all goes well and he recovers fairly quickly.
I am hoping that Morgan will rest well and wake up with some energy later this afternoon. Her last two cycles have started out with a pretty tough first day. In fact, the last treatment she had required a trip to urgent care after the first day of treatment. We are hoping to avoid that.
I will try to do another update after tomorrow's treatment. Thanks so much for checking in with us and for remembering our family in your prayers.
Prayer Request (I have added some new ones too):
1) Pray for the Lord to protect us while we are away from home.
2) Say a special prayer for Holden. Ask that all his needs be met and that he has all the comforts he needs while he has to be separated from his mommy and sister.
3) Pray for the Lord's continue blessings on Morgan's health. Ask Him to protect her and to never again to allow cancerous cells to grow in her body.
4) Ask the Lord to bless Morgan's upcoming scans and tests. Ask Him to reveal to us that she is still totally healthy and that there is no evidence of neuroblastoma anywhere in her body.
5) Ask for quick healing for my father's knee surgery.
6) Please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Saturday, June 26, 2004
Hello Friends,
This is a very quick update to let everyone know that we are home from vacation. It was a wonderful week. The airline lost one of our bags and that was a hassle, but it was delivered to us this evening -- just in time for me to unpack it and repack it in preparation for our trip tomorrow.
Morgan, Aunt Debbie, and I are flying out of Greensboro at 3:00 tomorrow afternoon. Hopefully, we will be in the Big Apple and settled into our room at the RM House by dinner time. Morgan has started her daily GMCSF shots to prepare her body for the ninth cycle of 3F8.
We are all doing fine. Morgan has had moments during the last week where she has seemed really tired. But, it was vacation and Florida was very hot -- we are hoping that this is all it was. Does the worry ever stop? She really does seem to be okay, but there is always that little thought nagging in the back of our minds that something is wrong. I have found that at times like this, if I really focus my mind on prayer to God that these thoughts diminish some. We worship a very Mighty God. He hears our prayers and seeks to have a personal relationship with us. Prayer is a necessity and it certainly carries us.
Holden is doing well. He is not potty trained (in case anyone is wondering). In fact, no progress has been made in that area whatsoever. I am trying to prepare myself for how much I am going to miss him during the next two weeks. When I was unpacking his clothes this afternoon, I became very very sad. I pulled out his little shorts and shirts and just sat there crying. I miss him so much when I am in New York that I feel like I cannot even say his name. I break down in tears at the thought of our separations. I know that he is being very well taken care of by people who love him tremendously. But as his mother, I want to be the one taking care of him. However, Morgan needs me and she needs these treatments. Therefore, I do what I have to do. The Lord will bring us through every trial and tribulation.
I hope that I have remembered to pack everything. I am feeling a bit frazzled and I realize now that having such a short amount of time at home has added some stress to this NY trip. I will update everyone on Monday after Morgan has her first treatment.
Prayer Request:
1) Pray for the Lord to protect us while we are away from home.
2) Say a special prayer for Holden. Ask that all his needs be met and that he has all the comforts he needs while he has to be separated from his mommy and sister.
3) Pray for the Lord's continue blessings on Morgan's health. Ask Him to protect her and to never again to allow cancerous cells to grow in her body.
4) Please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Friday, June 18, 2004
Hello Friends,
This week was not nearly as relaxing as last week, but it was still a great week. Sunday, the weather here was pretty yucky. So we were not able to go hang out at the pool for like we intended. Instead, we took the kids to see “Shrek 2”. What a cute movie! I must take a moment to brag on my dear son (who is still not potty trained). He has been such a little gentleman the last few days. We took him to Morgan’s recital knowing that someone would probably have to leave early due to Holden getting restless. But, he sat in his seat and behaved wonderfully. I did not think he could pull it off two days in a row and I remember how bad he was during “Finding Nemo”. Once again Holden was perfect. Either he is growing up and getting out of the terrible two’s or he is planning something really really big.
Morgan had three appointments this week. On Monday, we took her to see her regular pediatrician for a check-up. This was the first check-up that she has received on July 26, 2002. He said she is doing great and was pleased with her growth. Morgan was pleasant during the visit, except she acted like she is shy. The doctors and nurses who have treated Morgan over the last two years know that she is anything but shy. Morgan received her DPT immunization. This will either be her fifth one or her first one depending on whether or not Morgan has to re-start the immunization process. I am hoping her bone marrow kept a memory of her shots, but I am not really expecting that.
Tuesday, Morgan met with Jeff, the counselor on the HEM/ONC unit at Brenner Children’s Hospital. I suspected that Morgan had some control issues as a result of all she has been through. She indeed does, but what she is going through is perfectly normal for kids who have been through traumatic illnesses. She will probably be able to work through this things on her own as she gets older. Actually, I think she has improved quite a bit since the first time I mentioned these characteristics to her oncologist.
On Wednesday, Morgan saw the occupational therapist for another session. She did great. She even made a Father’s Day card for her daddy and the handwriting on it was beautiful. I am so glad she is doing occupational therapy. It certainly helps me to calm some of my fears about sending her to kindergarten. I think that by the end of summer she will be caught up with her deficits or else she will be really close.
Yesterday and today we just had fun. On Thursday, my friend, Kimberly, came to visit with her kids. We spent the afternoon at the pool. Morgan is becoming quite the little fish. She is pretty much teaching herself to swim because goodness knows she will not listen long enough to let anyone teach her. Today, Holden’s class had their end of year picnic at City Lake Park in High Point. It was very fun, but it was very hot. Morgan went along with us because she missed this field trip when she was in Mrs. Tonjua’s class. She and Jerry were en route and had car trouble. She does not remember this, but we do. Today was our chance to make it up to her and give her the opportunity to have some fun with her little brother.
Tomorrow we are leaving for vacation. We are all very excited. We will come home on the 26th and on the 27th Morgan and I will leave for NY. Morgan and I are going to spend a grand total of 24 hours at home between now and July 9. We are very busy, but we certainly our blessed. (Debbie, if you read this our flight leaves at 3:00 on Sunday. I will call you soon! Thanks so much for going along with us). I will do another update next Saturday during my 24 hour layover in North Carolina.
Prayer Requests:
1) Ask the Lord to never again all cancer to grow in Morgan’s body..
2) Please don't forget about all the other Neuroblastoma Warriors.
3) Pray for the Lord to bless our next trip to NY. Ask Him to keep us safe and allow Morgan’s treatments to be effective.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Saturday, June 12, 2004
Hello Friends,
Surprisingly, this has been a rather relaxing week. I am out of work for the summer and we did not have a lot of appointments this week. Mostly, we hung out at home and enjoyed having very little to do. Occasionally, we decided to venture out of the house and go to the pool. It is weeks like this that help me remember why it is so wonderful to work in the education field. I love my job during the school year; and I really love my job during summer vacation.
The only appointment Morgan had this week was on Thursday with the occupational therapist. It went well. Actually, Morgan made quite a bit of progress in only one session. She is getting better at writing her name every day. The best thing is that Morgan loves these sessions. It must be a lot of fun because Morgan always cries when it is time to leave and asks when she will be able to return. We have another appointment next week.
On Friday, Morgan had rehearsal for her dance recital. I must admit that while we were going through the process of getting her dressed I was wishing in my mind that she did not have an interest in dance. I was thinking, “Why couldn’t she be interested in sports like I was?” The thought crossed my mind that it would be much easier to dress her in a t-ball uniform than have to put her in a tutu. As I was struggling to fix her hair I was wishing that I could just slap a ball cap on her head and head out the door. (Although I was very thankful that she had enough hair to struggle with). Well, all of my negative thoughts flew out the door when Morgan stepped out on the stage. The song, “It’s A Beautiful Morning”, began to play. Morgan was glowing as she raised her arms above her head and did a perfect pirouette. I thought it was perfect anyway. Morgan truly loves dancing and I will never again think for even a moment that I want her to be something else. I will always encourage Morgan to do the things that make her happy. And watching her last night I realized that she wants to dance. So dance away Little Princess!
Today is recital day. There will be two performances. I will spend the whole day at this event. But, I know that it is going to make my child happy. I can’t promise that I will ever be a good “stage mom” because it is just not in me. But, I will be there to support my children in whatever they want to do. And, if someday Holden decides he wants to be a dancer too, I will support that. Jerry on the other hand . . . ? Actually, we have both learned a lot about our own preconceived ideas about what our children will be. We have learned that we have no way of knowing what will happen to them in the course of their journey in this world. We just need to love them and pray for them everyday.
Speaking of Holden, he is still not potty trained. But, I did make the decision to put him back in underwear. It was just as big a failure as it was the first time I tried. But, I decided that since I am home for the summer that I have more time to do laundry and Jerry was going to have to take a second job based on the amount of money we were spending on pull-ups. Actually, we have found that what really works best is to strip him from the waist down. He will not use the bathroom except on the potty if he is naked. This works great at home, but we have not found a way yet to use this method in public. He has not yet been able to transfer the process of using the potty when he is naked to using the potty when he has on pants. I realized as I was typing this that someday my son will probably chastise me for sharing his potty training experience with everyone who reads this website. Sorry son!
Morgan’s health still seems to be terrific. We have even taken care of the runny nose problem. I have put her on over-the-counter children’s Claritin. It is working really well. She is still full of energy and she never wants to go to sleep at night anymore. When we put her down, she talks and talks and talks. It is like music to our ears although sometimes we are just ready for her to drift off to sleep. We are tired at 11:00!
Next week will not be as relaxing as this one was. Morgan has appointments on Monday, Tuesday, and Wednesday. Friday, Holden has a field trip and Morgan and I are going along with him. On Saturday, we are leaving for vacation. We decided to take the kids back to Florida. And thanks to early planning, the whole trip is rather affordable. Maybe we planned it a bit too early. I didn’t realize this until after then plans were made but we will return home on June 26 and on June 27 Morgan and I will head out for New York for her ninth cycle of antibodies. It looks like my relaxing weeks are over for a while.
I will try to do another update on Friday before we leave for vacation. Thanks for continuing to support our family with your prayers.
Prayer Requests:
1) Ask the Lord to never again all cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Saturday, June 5, 2004
Hello Friends,
I have added some new pictures to the family album. If you have not seen them yet, check them out.
This has been another busy week for us. But, I am happy to report that the school year is officially over for me. Maybe things will slow down some for me now that summer vacation has started (yeah right!). I have signed a contract to do the same job next year. I will still be working part time, which really is perfect for my schedule.
Morgan seems to be feeling great. She is a ball of energy all the time. There are even times when Holden cannot keep up with her. Lately, he has been falling asleep before her at bedtime and this is very unusual. The only health issue right now is that her nose is still constantly running. I have already scheduled an appointment with her regular pediatrician and I will discuss putting her on some type of allergy medicine.
Holden is still not potty trained. In fact, he still seems to not care about it (other than the fact that he likes to give me a daily report on who is potty trained in his class and who is not). We are spending a fortune in pull-ups. I vowed I would not use them with him, but I could not keep up with the amount of dirty laundry he was producing. I have decided that when I come home from NY the next time, I will attempt to put him in underwear again. We got a rather upsetting surprise this week. Holden’s teacher, Mrs. Tonjua, is resigning from her position as the teacher of his class. She has decided that she needs to work part time due to other obligations. She will still work at the center, but she will not be his teacher. I honestly cried when I read her resignation. Tonjua has been so special to our family since Morgan joined her class in the summer of 2001. Holden is scheduled to be promoted to the next class in August so he was soon to be without Mrs. Tonjua anyway. In fact, this may make his transition to the next class a little bit easier, because I knew that it would be difficult for him to leave her.
What has our family been us to this past week? On Sunday,, we had a great day visiting with Grandma Penny. When we came home from Thomasville, we ventured out to the pool again. It was a little bit chilly but both kids managed to have a great time. The only negative thing that happened was that there was a little girl who approached Morgan to play with her. The little girl was a bully and was very mean to Morgan. Morgan is not used to a world like this. Morgan is used to being around other children who are seriously ill. Usually, these kids have a sense of compassion that most people do not have. As hard as it was, Jerry and I sat back and watched this transpire knowing that Morgan will be forced to deal with all kinds of people. The sad part is that this little girl is also 5 and will soon be starting kindergarten too. I admit that my exposure to “normal” children is somewhat limited also. But, I worry that I am feeding Morgan to the wolves if this interaction was any indication of how kindergarten relationships will be. I hope that Morgan finds at least one close friend in school and that she is not an outsider for the entire school year. She has endured so much already that she deserves some happiness.
Memorial Day was fantastic. We went to a cookout at Jerry’s cousin’s, Phillip, and his wife, Tammy. The weather was fabulous and the kids had a great time playing. Morgan and Holden both loved jumping on the trampoline. I learned another lesson today about bullying. It seems as if my own son, my sweet and innocent little boy is also a bully. He picks on kids both bigger and smaller than himself. I am not happy about this at all. I am not sure where he gets this aggressive streak. Morgan is not at all aggressive unless it is due to some narcotic induced rage. Maybe Holden is just going through a stage. I hope so, and I hope he grows out of it really quickly. It mortifies me when I catch him throwing things at other children or kicking them when he thinks that no one is watching.
Wednesday was a special day for Morgan. She had an outing with Grandma Vicky, Paw Paw, and Smith. It was a celebration of the fact that Smith and Morgan will be heading for kindergarten this fall. It was kind of like final field trip for Grandma and Paw Paw’s daycare. They started out the day at Krispy Kreme, where they watched doughnuts being made. This was a study in local history since Winston-Salem is the birthplace of the Krispy Kreme doughnut. Then they headed to SciWorks for some natural science lessons. They had lunch at a pizza parlor and then finished up the afternoon with a trip to the park. Wednesday was also special for Mommy because I had the opportunity to have dinner with my dear friend, Eva. While I was enjoying a night out, Daddy took Morgan and Holden to the pool. He must have totally worn them out because they were fast asleep by the time I got home.
On Thursday, Morgan had an appointment with the occupational therapist. The results of the assessment really were not that much of a surprise to us. Morgan is about six months behind in her fine motor skill development. The therapist said that this was probably a result of the fact that Morgan did not crawl long enough as an infant. When Morgan was nine months old, she basically just stood up and started walking. Babies who do not crawl for a long period of time do not have a chance to develop the muscles in their hands. Then during the time when Morgan should have gotten caught up in this area, she was sick. So Morgan is going to receive occupational therapy on a regular basis until she gets caught up in this department.
The Lord has blessed us because through it all Morgan has retained her cognitive skills. Yesterday, I took her to Lewisville School for her kindergarten assessment. I am very proud to report that Morgan is academically ready for kindergarten. Morgan’s chronological age is 4 years and 10 months. She was assessed in three different academic areas. Morgan’s lowest score was equivalent to a 5 year 7 month old. Her highest score was equivalent to a 6 year 4 month old. The other score was equivalent to a 5 year 10 month old. We still have concerns regarding whether or not Morgan is socially ready for school. But, I can honestly say that she is making improvements very quickly so hopefully we will have a little more confidence regarding this issue in August.
We plan to have a relaxing weekend. Jerry and I are donating platelets today while the kids stay with Grandma Vicky and Paw-Paw. After our donation, we are going to Brenner Children’s Hospital to visit with the Faulkner family. They are the family that goes to our church whose son, Ethan, was diagnosed with leukemia a few months ago. Maybe Jerry and I will have time afterward to sneak away and enjoy a dinner together. We still have to run this one by the grandparents.
Prayer Requests:
1) Ask the Lord to never again all cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Saturday, May 29, 2004
I have added three new pictures to the photo album so be sure to check them out.
Hello Friends,
Is it Saturday again already? Another week has flown by. We have another week in which we can praise the Lord for all of the wonderful blessings that He has given us.
On Tuesday, we took the kids to Paramount’s Carowinds thanks to our World Passport from Make a Wish and Give Kids the World. It was a wonderful day. The kids had such a good time. The only bad thing that happened the entire day was when Morgan decided to pull a disappearing act. We were in the wave pool of all places. I stopped to help Holden with something and when I looked up Morgan was nowhere to be seen. As soon as Jerry and I both figured out that neither of us knew where she was, the bell rang signifying that it was time for the rush of waves to start. Morgan was wearing a life vest, but still we were petrified. Jerry started swimming around trying to find her and I contacted a lifeguard. Jerry located Morgan in the middle of the pool. When he asked her what she was doing, she casually said, “I’m floating” – like duh, Dad. This all transpired in about 45 seconds but it seemed like it was much longer than that. I know that I have been praying for Morgan to get her independence back, but now I think she has quite enough. That was such a scary feeling. But then again, after all Morgan has been through over the past two years how can I expect her to be afraid of things like strangers and wave pools. She has faced cancer; what can be scarier than that?
Morgan’s appointment with the occupational therapist was cancelled on Thursday. It has been rescheduled for this Thursday. She also has her kindergarten assessment on Friday of this week.
It seems as if there was some miscommunication between myself and Morgan’s doctors. When Morgan was one year out of transplant, I asked her doctors about checking to see if she was ready to re-immunize. They advised that we have a tetanus titer drawn. Well, we did and the doctors notified me that the results her low. I took this to mean that she was not ready. At her last clinic visit, I had them drawn another titer. This time, the email from the doctor can that she is still not showing a response to tetanus. Well. This confused me so I replied to the email and asked how she could show a response to tetanus when she had not had a tetanus shot yet. OOPS! Morgan was supposed to have a tetanus shot and then have a titer drawn. Someone forgot to share this information with me. I am just glad I figured it out or Morgan would never be able to get her immunizations. I am going to call her pediatrician this week and set up an appointment for her to get a tetanus shot.
Today was a really good day. We went to the pool this morning and the kids had a blast. Morgan and Holden both love being in the water. And thankfully, we were able to keep up with both of them for the whole time we were there. This evening, we attended the gospel concert that was held for Morgan. Both of the bands were terrific and it was a blessing just to be there. The fundraiser was a huge success and our family is truly appreciative to everyone who played a part in helping us out.
Prayer Requests:
1) Ask the Lord to never again all cancer to grow in Morgan’s body..
2) And please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Click HERE for more information.
God Bless,
Allison
Saturday, May 22, 2004
MONDAY MAY 24 -- THE DATE OF THE GOLF TOURNAMENT HAS BEEN CHANGED. IT IS NOW PLANNED FOR AUGUST 27.
Hello Friends,
Another week has passed us by. We are all doing very well here. The past week has been busy but we are all enjoying our time together.
Monday, Morgan had her end-of-year picnic for preschool. It was a lot of fun. On Tuesday, I did not have to work so both kids and I stayed at home together. I got out the kiddie pool and put it under a large tent. I felt sure the kids would stay in there about an hour or so and then be bored with it. Well, four hours after we got in the pool I had to drag both kids into the house kicking and screaming. They had a super time. It was a great way to spend the afternoon. Morgan attended her last day of preschool on Wednesday. She is out of school for the summer and seems to be looking forward to starting kindergarten in the fall.
Last night, we attended the Forsyth County Relay for Life. The teachers at Holden's school (which used to be Morgan's school) sponsored a team. It was a great event. I think Morgan was the youngest Survivor present; she was the youngest one I saw anyway. Morgan was not in a very good mood. They had some of those big bouncey things for the kids to play on. Morgan had to be pulled off of them in order to walk the Survivor's Lap. She was unhappy and therefore cried for pretty much the entire Survivor's Lap. Due to her behavior, we did not stay at the Relay for Life for long after the Survivor's Lap. But, it was still an honor for Morgan to be able to attend this wonderful event. The highlight of our night was seeing old friends. We saw Laurie and Shea, a nurse and NA from Brenner's. Also, we had the chance to visit with Sarah,a fellow neuroblastoma warrior, and her mother. I think next year Jerry and I would like to get a team together and plan on staying for the entire time. It seems like it would be a lot of fun.
Morgan is still HAMA negative. This means that she will start her ninth round of antibodies on June 28. Aunt Debble will be going with us this time. We will be spending Independence Day in New York City. Last year, we fly home on July 4. We would much rather be home on July 4, but I am thankful for each and every cycle of antibodies that Morgan receives.
This week, Morgan will have her last speech class for the school year. I went to Lewisville school last week for Morgan's IEP meeting. This meeting was basically an opportunity to discuss transitioning Morgan from a preschool speech program into the kindergarten speech program. Not a lot will change in terms of her classes. She will still get two thirty minute speech classes each week.
Morgan is going to have a occupational therapy evaluation done on May 27. This is just another step in making sure that is will be ready for kindergarten in all possible ways. And, if we discover that she has some defiencies in certain areas, then we will take care of those once she starts kindergarten. One of the main reasons we decided to enroll Morgan in public school is because they offer much more extensive special programs for exceptional children.
Prayer Requests:
1) Ask the Lord to never again allow this horrible disease to start growing in her body.
2) Ask for the Lord to allow Morgan the opportunity to be a normal little girl and never again have to endure the hardships of having cancer.
3) And please don't forget about all the other Neuroblastoma Warriors.
ANNOUNCEMENTS:
There will be a gospel concert to honor Morgan. It will be at 6:00 on May 29 at Southeast Middle School in Kernersville. The groups who will be performing are Servants for Thee and Faithful Heart. Admission is free. If you would like directions to the school, please email me.
ATTENTION ALL GOLFERS: THE DATE OF THE GOLF TOURNAMENT HAS BEEN CHANGED. THE NEW DATE IS AUGUST 27. I WILL BE ADDING MORE INFO ABOUT THE TOURNAMENT SHORTLY.
The Second Annual Morgan Barnes Golf Tournament will be held on AUGUST 27, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Saturday, May 15, 2004
Hello Friends,
I decided not to wait so long before doing this update. It has not even been a week yet, but I thought I would let everyone know how Morgan's clinic visit went on Thursday.
As I have said before, going to clinic now is very different than it was in the days following Morgan's diagnosis. But, I must say that as soon as I set foot in the hospital I smell that old familiar smell. And riding the elevator up to the ninth floor brings to mind the feelings of all the previous times we have made that journey. It is still painful, but it is oh so wonderful to know that the Lord has brought us through this journey and today we have a beautiful, healthy and happy almost-five-year old.
Morgan's clinic visit was fairly routine. She has grown 3/4 of an inch since we were last at the clinic at Brenner's. She still has not officially made it over the 40 pound mark. She weighed in at just over 37 pounds. We saw Dr. McLean and he gave Morgan a check-up. He gave her a clean bill of health and said she looks great. Morgan had the opportunity to show off all of her battle scars to a med student. The doctor was very impressed with Morgan's behavior. She readily climbed up on the table like a very big girl and allowed him to do all necessary examinations. She even had a nice discussion with him about how she used to cry every time she had to come to clinic and did not want anyone touching her. We discussed my concerns regarding psychological issues and he suggested that we start with Jeff, the pediatric oncology counselor. Morgan is going to see Jeff in June. The only thing I forgot to ask him about was her chronically runny nose. But, I have noticed that it is getting a lot better now that allegy season is slacking off some. It really is not bad at all anymore if she is inside. It still runs a lot when we are outside. I may have to make her an appointment with her regular pediatrician if her symptoms continue beyond allergy season. After Dr. McLean visited with us, one of the nurses came in to access Morgan's port to draw the necessary blood samples. She had a CBC drawn. I assume that everything was fine because no one called to tell me otherwise. It is such a nice feeling to know that we do not have to wait around for blood count results to see if she needs any blood or platelets. The nurse also took a tetanus titer to see where we stand in terms of starting the re-immunization process. And finally, the HAMA blood was drawn and properly packaged. It should be in New York City right now. It will be tested on Tuesday and I will know on Wednesday if I need to call the airline to make reservations for a trip to do another round of antibodies at the end of June.
After the doctors and nurses were all finished with Morgan we had the opportunity to visit with Morgan's new friend. A month or so ago we learned of a family at our church whose little boy was diagnosed with leukemia. Ethan and his mommy were checking in for a round of chemo this weekend so we got to meet them. I spent some time getting to know Ethan's mom while Morgan entertained Ethan in his room. I am sure this family would appreciate any and all prayers on behalf of their son. He has had a hard time with previous rounds of chemo. Plus, the family recently moved here from California so they do not have as much support as Jerry and I had in the early days of Morgan's diagnosis.
Morgan is gaining some independence and I am so proud of her. Tonight we had our annual neighborhood block party. This is the first one that we have been able to attend in a while and I am so glad that we could. As soon as we arrived, Morgan took off to play with a group of girls. She was out and about for most of the evening and the only time we caught sight of her was when we got up to go find her. I was so proud of her. This time last year she would not leave Mommy and Daddy's sides. The best part of all this is that one of these little girls will be starting kindergarten at Lewisville School with Morgan in August. It thrills me to know that she will have a friend in her grade. Morgan loves Brinley and talks about her all the time. I am hoping that they become really close over the summer. If they do, then I may check on making sure they end up in the same kindergarten class. I think it will be good for Morgan to start things off with a buddy by her side. If dirtiness is any indication for how much fun the kids had, then my two definitely enjoyed themselves more than anyone else there.
Another special treat that we had to day was a chance to visit with the mom of one of Morgan's cell mates from Duke. Reese is an angel now, but I am sure that many of you who have been following Morgan's story for a while remember me writing about him. Part of the block party festivities involved having family portraits taken. Shawn, Reese's mom, was the photographer. She came and took some pictures of us, which I hope to post soon. Then, she and I stood outside and talked for a while. Please pray for Shawn and her son, Taylor. Ask Him to comfort them at the times when they are missing Angel Reese the most and to reassure them that one day they will be reunited with their angel.
Morgan's stomach seems to be just fine now. She has had no more episodes and she seems to feel great. I guess kids who have had life threatening illnesses are allowed to get normal childhood things like upset stomachs. Sometimes, it is just hard for us parents to remember that.
On the potty training front, Holden now has a total lack of interest in the subject altogether. He has actually regressed and was doing much better when the process started. I know that this is normal for kids, but I still find it frustrating. So, in an effort to keep everyone in our home sane, we are taking a break from the potty training for a while. I am hoping to give Holden a week off and perhaps then he will show more interest in it than he is right now. Friday the two of us were home together for a while and I had to put a dry and/or clean pair of underwear on him every fifteen minutes. This is not an exaggeration! This tells me that obviously he is not ready yet and I need to chill out for a while. Right now, he is still wearing pull-ups but we are not practicing training in full force at the present moment.
Prayer Requests:
1) Ask the Lord to never again allow this horrible disease to start growing in her body.
2) Ask for the Lord to allow Morgan the opportunity to be a normal little girl and never again have to endure the hardships of having cancer.
3) And please don't forget about all the other Neuroblastoma Warriors.
ANNOUNCEMENTS:
There will be a gospel concert to honor Morgan. It will be at 6:00 on May 29 at Southeast Middle School in Kernersville. The groups who will be performing are Servant's For Thee and Faithful Heart. Admission is free. If you would like directions to the school, please email me.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on July 23, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Tuesday, May 11, 2004
Hello Friends,
Yes, I know that it has been over a week since I posted a journal. The truth of the matter is that we have just been enjoying our time at home together as a family. Our lives are very normal right now, which is a terrific thing.
Morgan quickly resumed her normal activities after returning home from New York. The school year is winding down for her. The last day is May 19. I think Morgan really enjoyed preschool and I am so thankful that she had the opportunity. Morgan's speech classes will be over soon too. I think she has made great strides; especially when you consider how many days she missed due to having medical appointments. Dance classes are coming to an end too. The grand finale will be on June 12 (a recital). I think Morgan is excited about this, but in the past she has experienced stage fright so we will have to see what happens on recital day. Last night, Morgan's dance class had their pictures done for the recital program. Those little girls were certainly adorable and will definitely have a showstopping performaance (even if none of them decides to dance).
We enjoyed a relaxing Mother's Day. We went to the Tennessee mountains and enjoyed some family time together. It was a wonderful and precious gift to just spend time with the three people I love the most without having to worry about any obligations whatsoever. The kids were able to swim and we played one game of Putt Putt. Other than that, we did not do anything but enjoy each other's company.
Last night, Morgan woke up vomiting. It seems as if it was an isolated incident because she has been fine ever since. Jerry took her to the pediatrician this morning just to make sure her ears looked okay. Her ears were perfect and he found nothing wrong with her. Of course, this causes us a little bit of worry because it is impossible for Morgan to just be a little sick without causing fears in our minds. But, she really does seem to be fine so we will just keep praying that she is in perfect health.
Holden is doing great. He loves school and he really seems to be happy all the time. We are still working on potty training. Jerry and I are working a lot harder than Holden is. I was a bit disappointed that he was not finished with this little project when I got home from New York. But, oh well, I guess this will happen in time (or at least I hope so).
I will take Morgan to clinic Thursday. They will do a blood count, give her a check up, and draw blood for me to send to New York for HAMA testing. I guess they will also do a tetanus titer to see if Morgan is finally able to start the reimmunization process. I also plan to discuss whether or not Morgan needs a psychological evaluation. She seems to have a few unrealistic fears and some obsessive compulsive characteristics. I am not a clinical psychologist and may be totally off with my observations. But, I want to make sure every single aspect of Morgan's well-being is cared for. I want her to have as normal a life as possible. I feel like this is just another step towards that goal.
Prayer Requests:
1) Pray that Morgan's upset stomach was nothing more than a simple bug and is not a sign that there is a serious problem.
2) Ask the Lord to protect Morgan's body from cancer. Ask that He never allow it to return and that He grant her a long and healthy life.
And please don't forget about all the other Neuroblastoma Warriors.
ANNOUNCEMENTS:
A big thank you goes out to my co-workers and students at Southeast Middle School. The silent auction fundraiser was a tremendous success. My heart was truly touched by the love that the staff and students showed to my family.
There will be a gospel concert to honor Morgan. It will be at 6:00 on May 29 at Southeast Middle School in Kernersville. The groups who will be performing are Servant's For Thee and Faithful Heart. Admission is free. If you would like directions to the school, please email me.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on July 23, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Friday, April 30, 2004
UPDATE MAY 1, 2004
WE ARRIVED HOME ON SCHEDULE TODAY. WE ARE SO HAPPY TO HAVE OUR FAMILY BACK TOGETHER AGAIN!
I HAVE ADDED NEW PICTURES IN THE PHOTO ALBUM SO BE SURE TO CHECK THEM OUT!
I WILL DO ANOTHER UPDATE IN A WEEK OR SO. WE ARE HOPING TO MAKE IT THROUGH THE NEXT WEEK WITH NOTHING MAJOR HAPPENING THAT WOULD REQUIRE A POST HERE ON THE WEBSITE.
Hello Friends,
Yes I know; I did not do a journal entry yesterday. I am very sorry. The truth is that I was so exhausted yesterday afternoon that I totally forgot. Honestly, I was sitting in bed last night here at the RM House and I remembered that I did not do an update.
Let's go back to Wednesday night. Morgan had a great night. Our friends from New York Life sponsored one of their nights here at the House. They do this on a regular basis. The evening was great. Morgan enjoyed doing arts and crafts and they served us delicious pizza. It was a very relaxing evening and a good time was had by all!
Okay, now on to Thursday. Thursday was a very interesting day. Morgan had a pretty routine treatment. Then, about 30 minutes after the dilaudid had been given (she had two doses) she snapped. These treatments are very hard because even when I think I have seen it all, something happens that I have never before witnessed. Morgan had a violent, raging episode. I am not even sure what set her off, but she sat up in the bed and starting hitting me and kicking me. There was a look in her eye of a completely mad woman. I had to leave the room and once I left Cat, our nurse, sent Mom and Renae out of the room. Cat explained to Morgan that we would return once she became calm. She managed to calm down somewhat, but she was still in a terrible state of mind after we left clinic. Then, her good mood started again as quickly as her bad mood started. The evening was actually pretty good. We went for a long walk and then came back to the room to relax. She went to bed around 9:00 and was very tired when she got up this morning.
Today's treatment was much better than yesterday's. Today, we started giving Morgan half doses of diluadid rather than the full doses. This is good for two reasons. One, Morgan believes that she is getting more medicine because it can be administered more frequently. And two, the smaller doses seem to help her stay calm. Her attitude was much better today than yesterday. At least this cycle ended on a good note. This has been a tough one. And, judging from the pain that Morgan had today she still has not achieved HAMA which means that a ninth treatment is probably in our future. Morgan had one and a half doses of pain medicine today. We will send blood back to NY in two weeks for the official results but pain always means that HAMA has not yet been achieved.
We are now in the process of packing our bags. I could not get us a flight out this evening so we are taking a very early flight out in the morning. We should arrive home by noon tomorrow. I guess when you have been away from home for two weeks, twelve more hours is really not that important but MAN I AM SO READY TO BE BACK IN NORTH CAROLINA!
I plan on leaving this update up long enough for my mother to get home and read it. Mom, I really do appreciate the fact that you drop everything for two week periods to come up here with me to New York. You are so good with Morgan and sometimes do better with her than I do myself. That does not surprise me though because you were such a wonderful mother to me. Here you are still taking care of me almost 31 years after my birth. I may not say this enough but I thank God for you every night. Morgan and I would be lost without you!
And for my father, you are wonderful too! I am sure that it is hard for Mom to be gone for two weeks, but I have never heard a single complaint. You have always put your children first and I am sure that sometimes it seems like you are still waiting for your turn to be first.
Mom and Dad, I love you both very much and have witnessed from both of you a wonderful example of what a parents should be.
Prayer Requests:
1) Ask for the Lord to bless these treatments. Allow them to be effective so that cancer will never again return to Morgan's body.
3) Ask for the Lord to protect us while we are away from home.
4) Say a prayer for Holden. This separation seems to get harder on him everytime we leave.
5) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION:
My co-workers at Southeast Middle School in Kernersville are holding a silent auction for Morgan which is open to the public. The items are displayed in the main office of the school on school days from 7:00 to 3:00. (There was an article regarding this fundraiser in the Kernersville News on Saturday).
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on July 23, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Wednesday, April 28, 2004
Hello Friends,
Two more treatments to go until it is time to head back to North Carolina. We are very happy that this treatment cycle is coming to an end; it has been a tough one for our Little Princess.
Yesterday was a lazy day. Morgan did not take a nap, but she did manage to snap out of her bad mood around seven last night. She went to sleep around nine and had a hard time getting out of bed this morning. The highlight of our evening was when our friend, Renae, showed up to offer us some company for the last few days of our stay. She is becoming a regular with us and it sure helps to break up some of the monotony of sitting in our room at the RM House all day long.
Treatment today was better than the last two days. The pain level was about the same and Morgan needed two doses of pain medication to make it through. Morgan's attitude after treatment was slightly better. We got back to the room and she played for a while and then fell asleep. She slept while Mom, Renae and I watched a Lifetime movie. Morgan got in a good two hour nap and was just beginning to stir when I came down here to type this update. We still experienced some of the behaviors from the last two days, but it was much more tolerable than the other days this week.
Prayer Requests:
1) Pray that Morgan does not spike anymore fevers during our trip and that nothing else happens which could send us back for another inpatient stay.
2) Ask for the Lord to bless this treatments. Allow them to be effective so that cancer will never again return to Morgan's body.
3) Ask for the Lord to protect us while we are away from home.
4) Say a prayer for Holden. This separation seems to get harder on him everytime we leave.
5) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION:
My co-workers at Southeast Middle School in Kernersville are holding a silent auction for Morgan which is open to the public. The items are displayed in the main office of the school on school days from 7:00 to 3:00. (There was an article regarding this fundraiser in the Kernersville News on Saturday).
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on July 23, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Tuesday, April 27, 2004
Hello Friends,
Sorry for the lack of an update yesterday. I am using my same old excuse -- Morgan kept me very busy and then when I finally got a chance to break away for the computer lab, it was closed.
We had a very nice weekend. On Saturday, the weather here in NYC was beautiful. At 10:30 am we started walking toward Midtown. We walked just about the whole day away and returned back to our room around 5:00. We did not set out to see any specific sites, but Morgan really did enjoy all of the flags at Rockefeller Plaza. We also stopped by the Disney Store, which Morgan refers to as the Princess Store. The weather was not as helpful on Sunday. It was pretty rainy and dreary. We managed to take a short walk and stop by St. Catherine's Park. It was a very short trip to the park. Then, Morgan decided she was ready for McDonald's again. Morgan is kind of a funny kid. Whenever we are in New York, she gets on a kick for one particular food. Sometimes it is pizza, sometimes it is ham, and sometimes it is hard rolls. Well, this time she is really into Happy Meals. Yesterday, we had to make three trips to McDonalds to satisfy her.
We woke up Monday morning to more rainy weather. This should have been an omen to us for the general mood of Morgan's treatments. Actually, the treatment part has been okay, but her behavior afterward has been horrendous. I think when we were up here in February I commented that I could really tell Morgan had matured because she was so much more well behaved following treatment. Well, for the last two days she has taken some major steps backward. She pretty much breezed through treatment yesterday. There was some pain involved, but she made it through with only two doses of pain medication. Today was a little bit tougher and I think she needed three doses of dilaudid. She has started something new the last two days that I have never seen before. When the pain starts, she gets really really red and then she starts talking. And she talks and she talks and she talks. It is non-stop chattering. She sets some ground rules, but generally she is pleasant. Then, all of a sudden it is like someone flips and switch. She totally loses it. She continues to talk but now it is more like Linda Blair from the Exorcist. She is screaming and yelling and hitting and kicking. Somehow in all of this she manages to scratch her nose and bleed profusely all over her face. This has happened the last two days.
I don't even want to talk about when it is time to leave. She screams and yells even louder. Imagine this scene. I am pushing Morgan up First Avenue and she is screaming bloody murder. And, she has blood streaks all over her face and the look of an enraged animal in her eyes. New Yorkers do not stare at many things, but this is a site that no one can avoid looking at.
Yesterday, Morgan refused to take a nap so her bad mood lasted until it was time to go to bed. I was so tired this morning that I don't think I even opened my eyes until I had been standing in the shower for three minutes. Today, Morgan seems to be following the same general pattern. It appears like it is going to be another really long day. I just keep telling myself how thankful I am to God that He has brought Morgan this far through the treatment process and that He has even made this treatment available to Morgan. There are countless families that would love to be where we are right now. These thoughts are helping me to keep my sanity.
Prayer Requests:
1) Pray that Morgan does not spike anymore fevers during our trip and that nothing else happens which could send us back for another inpatient stay.
2) Ask for the Lord to bless this treatments. Allow them to be effective so that cancer will never again return to Morgan's body.
3) Ask for the Lord to protect us while we are away from home.
4) Say a prayer for Holden. This separation seems to get harder on him everytime we leave.
5) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION:
My co-workers at Southeast Middle School in Kernersville are holding a silent auction for Morgan which is open to the public. The items are displayed in the main office of the school on school days from 7:00 to 3:00. (There was an article regarding this fundraiser in the Kernersville News on Saturday).
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on July 23, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Friday, April 23, 2004
Hello Friends,
Yesterday ended up being a very good day for Morgan. We took her to St. Catherine's Park in the afternoon. She played for about an hour. Then we went to McDonald's where she enjoyed a Happy Meal and icecream. But, the day must have been pretty tiring for her. She fell asleep around 6:00 last night. She woke up at 6:00 this morning in a terrific mood.
Today's treatment was not as good as yesterday's but better than the first three days of this week. She needed two doses of dilaudid and it zapped that terrific mood she was in when she woke up. However, it did not take her too long to snap out of it. We came back to the room and she watched a few episodes of Dora. Then she told us that she was ready to go to St. Catherine's Park. Today she played for about 30 minutes. Then, we went back to McDonald's and Morgan had a Happy Meal and icecream. Is anyone noticing that Morgan is a creature of habit? After we left McDonald's we went on a nice long walk. It was good to get out and get some fresh air (or the NY version of fresh air). It felt like we had been stuck in our room for quite awhile since I have been hesitant to venture out and about the RM House due to Morgan's cough. Morgan has not had any coughing fits today (Praise the Lord). But, she is completely exhausted right now so I expect that we will be in our room for the rest of the evening.
We do not have any plans for the weekend. Hopefully the weather will cooperate and we can do something fun. Regardless, I am sure we will all enjoy being away from clinic for the next two days. Morgan's body just needs a chance to relax since treatment has been pretty hard on her the last five days. We can now celebrate the fact that one week is behind us and we only have five more days of treatment until it is time to return home again.
Prayer Requests:
1) Pray that Morgan does not spike anymore fevers during our trip and that nothing else happens which could send us back for another inpatient stay.
2) Ask for the Lord to bless this treatments. Allow them to be effective so that cancer will never again return to Morgan's body.
3) Ask for the Lord to protect us while we are away from home.
4) Say a prayer for Holden. This separation seems to get harder on him everytime we leave.
5) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION:
My co-workers at Southeast Middle School in Kernersville are holding a silent auction for Morgan which is open to the public. The items are displayed in the main office of the school on school days from 7:00 to 3:00. (There was an article regarding this fundraiser in the Kernersville News on Saturday).
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on July 23, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Thursday, April 22, 2004
Hello Friends,
Today's treatment was much better than the past three days. She only needed one dose of pain medication to make it through. Morgan acted like the perfect little lady today when it was time to leave clinic today. She has been tired, but awake, all afternoon.
The only problem we have right now is Morgan's cough. The treatment that she has causes an allergic reaction type cough. It lasts most of the afternoon and sometimes into the evening. There is really nothing that we can do for it. I asked the nurses at clinic about it and they said that cough medicines would not touch that type of cough. So, poor Morgan has to endure a constant, nagging cough. I am sure it wears her little body out; not to mention the fact that after coughing so much her throat and chest probably hurt. She will lay there and say, "Oh cough, please go away!". It is frustrating that I can not do anything for her. And even harder is the fact that the cough keeps us shut up in the room. Since there are so many neutropenic kids here at the RM House, I do not feel comfortable taking her out of the room with that nasty cough. I know what it is caused by, but the other parents do not. I fully understand the looks we get when we are out of our rooms and Morgan is hacking away. She is not going to make anybody sick, but I remember how I was when Morgan had no immune system and someone would be in our presence coughing. Hopefully, she will not be coughing this weekend since she will not be getting treatment.
Prayer Requests:
1) Pray that Morgan does not spike anymore fevers during our trip and that nothing else happens which could send us back for another inpatient stay.
2) Ask for the Lord to bless this treatments. Allow them to be effective so that cancer will never again return to Morgan's body.
3) Ask for the Lord to protect us while we are away from home.
4) Say a prayer for Holden. This separation seems to get harder on him everytime we leave.
5) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION:
My co-workers at Southeast Middle School in Kernersville are holding a silent auction for Morgan which is open to the public. The items are displayed in the main office of the school on school days from 7:00 to 3:00. (There was an article regarding this fundraiser in the Kernersville News on Saturday).
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on July 23, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Wednesday, April 21, 2004
Hello Friends,
Morgan was released from the hospital last night around 7:30. We originally got the go ahead to leave a little earlier than that, but just as we were heading out Morgan got sick on her stomach. Therefore, we waited around for another hour or so. She seemed fine so we took off. After we got back to our room, she perked up quite a bit. She was in a super mood until treatment started again today.
Today's treatment was just as painful as the last two days. She needed three doses of diluadid again. Morgan has never needed three doses for three days in a row. The pain medicine has conked her out again. We got back from clinic today at 11:50 and she has been asleep for the last two hours. I am once again hoping and praying that we do not have a repeat performance of Monday. I don't think we will. I took her temperature before I left the room and it was a very normal 98.8. Also, she seems to be sleeping much more peacefully today than she did on Monday and she looks a lot better today also. The bottom line is that this is a very harsh treatment. So far this cycle has been much more harsh than I remember the last seven being on her. But, at least the first week is over halfway over.
Prayer Requests:
1) Pray that Morgan does not spike anymore fevers during our trip and that nothing else happens which could send us back for another inpatient stay.
2) Ask for the Lord to bless this treatments. Allow them to be effective so that cancer will never again return to Morgan's body.
3) Ask for the Lord to protect us while we are away from home.
4) Say a prayer for Holden. This separation seems to get harder on him everytime we leave.
5) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION:
My co-workers at Southeast Middle School in Kernersville are holding a silent auction for Morgan which is open to the public. The items are displayed in the main office of the school on school days from 7:00 to 3:00. (There was an article regarding this fundraiser in the Kernersville News on Saturday).
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on July 23, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Tuesday, April 20, 2004
Hello Friends,
Our little princess continues to keep things exciting here in the Big Apple. Yesterday, I wrote that Morgan probably would not take a nap because she never ever does. Well, I was very very wrong. She slept all day long yesterday. In fact, I thought she was going to go straight through the night and wake up this morning ready to head off for another day of treatment. Around 10:30 last night she finally stirred and called for me. When I went to her, I noticed that she was burning up. I immediately pulled out the old thermometer. In the past, she has had fevers on the first day of treatment but I was in no way prepared for what happened. Her temperature was 105 -- yes that is right 105. When I called the urgent care department here at MSKCC, they asked if I meant 100.5. When I said, no it was one, zero, five they told me to bring her in immediately. We arrived in urgent care at 11:20 and were moved up to a room here at Chez Inpatient around 4:00 this morning. Morgan continued to have a fever through the night, but it had come down to a much more normal 102. They started antibiotics last night. This morning she woke up and seemed to be okay.
Cat, one of our 3F8 nurses, came into her room around noon today to administer treatment. It was excruciating today. She needed three doses of pain medication to make it through again today. When it was over, Morgan was very mad for a while. She did her normal yell at Mommy thing. Then, her mood changed suddenly. She seemed okay for awhile and then she drifted off to sleep. She is sleeping now. I am hoping that she is not trying to pull off a repeat performance of yesterday. I spoke with one of the doctors a few moments ago. They are going to give her one more dose of antibiotic around 5:00 this evening and then we are going to be released (as long as Morgan does not spike anymore fevers). No one is really sure what caused such a high fever. I am honestly not that concerned about it since she just had clean scans a month ago and she has been out of chemotherapy long enough that infections are not that major anymore. If I had to guess, I would say that the fever was a side effect of 3F8 combined with a cold or something. I am not a doctor, but it makes sense to me. Of course, the medical team is running cultures on her blood just to make sure that there is no infection in her port-a-cath or anything like that.
Prayer Requests:
1) Pray that Morgan's fever is nothing serious and that she does not spike anymore during the duration of our trip.
2) Ask for the Lord to bless this treatments. Allow them to be effective so that cancer will never again return to Morgan's body.
3) Ask for the Lord to protect us while we are away from home.
4) Say a prayer for Holden. This separation seems to get harder on him everytime we leave.
5) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION:
My co-workers at Southeast Middle School in Kernersville are holding a silent auction for Morgan which is open to the public. The items are displayed in the main office of the school on school days from 7:00 to 3:00. (There was an article regarding this fundraiser in the Kernersville News on Saturday).
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on July 23, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Monday, April 19, 2004
Hello Friends,
The last week has been terrific for our family. We really made a point to enjoy ourselves before Morgan and I had to depart to NY again. It was wonderful! The highlight of my week was on Friday. Jerry and I went out on a date. Thanks to our dear friend, Heather. She agreed to babysit for us. We went to Greensboro to see my favorite band, Third Day, in concert. In February of 2002, I bought tickets to see them, but Jerry had to go out of town on business on the day of the concert. Then, when they came back to town on October 2002, Morgan was in the hospital getting chemo. When I found out they were coming to Greensboro again, I tried not to get too excited because things had just never worked out before. So, on the day of the concert I felt confident enough to get tickets and we were able to go. They are a very well-known band in the contemporary Christian sector. The concert was a very spiritual experience. At one point, about 7000 people in the Greensboro Coliseum were all singing "Worthy is the Lamb" in unison. I certianly felt the Holy Spirit.
Saturday, Jerry and I gave blood (always a good thing to do) and Grandma Vicky and Paw-Paw took the kids to watch their cousin, Smith, play T-ball. They both had a very nice time. For those of you who have known me awhile, you know that I grew up playing a lot of softball. I keep hoping that Morgan will share my enthusiasm for the sport. I was hoping that by going to Smith's game, watching him play, and noticing that there were lots of little girls out there too she would somehow get inspired. She enjoyed watching but she still has not interest in playing. She keeps saying that she wants to be a cheerleader. Is she really my child?
In potty training news, Holden is still working on it. He still has a long way to go. I told Jerry that I would not be upset at all if he has the child totally trained by the time I get home from NY. (I am not holding my breath for this to happen).
Now on to the medical news. Morgan, Grandma Vicky and I arrived in NY late last night. There were lots of delays getting here, in fact, more than we have ever had before. Morgan was excited (as always) when we checked into our room at the RM House. It was after midnight before she finally drifted off to sleep. I rolled her out of bed around 7:00 this morning to make our trip to clinic to start another round of 3F8. Treatment was fairly typical. She required three doses of dilaudid to get through it. She was thoroughly exhausted, so she slept very soundly for about 30 minutes after treatment. She woke up in a good mood and agreed to leave when "Little Bill" on Nickelodeon went off. She changed her mind right before it went off. Therefore, she pitched a small fit when it came time to put her in the stroller. She screamed a lot walking up First Avenue, but it was all fairly minor compared to some of the fits I have witnessed. But I did have to laugh when she yelled out, "I am mean, I am mad and I am angry." She is upstairs with Grandma now. She was in the bed when I left the room, but I seriously doubt that she will sleep because she never does. The weather here is quite nice so I am hoping that we will be able to get out and do something this afternoon.
I guess that is about all for now. Look for another update tomorrow. As always, we truly appreciate you taking the time to check in on our family and for keeping Morgan in our prayers.
Prayer Requests:
1) Ask for the Lord to bless this treatments. Allow them to be effective so that cancer will never again return to Morgan's body.
2) Ask for the Lord to protect us while we are away from home.
3) Say a prayer for Holden. This separation seems to get harder on him everytime we leave. Yesterday, at the airport he sobbed when we got out of the van. That broke my heart.
4) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING INFORMATION:
My co-workers at Southeast Middle School in Kernersville are holding a silent auction for Morgan which is open to the public. The items are displayed in the main office of the school on school days from 7:00 to 3:00. (There was an article regarding this fundraiser in the Kernersville News on Saturday).
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on July 23, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Sunday, April 11, 2004
Who His own self (Jesus Christ) bare our sins in His own body on the tree, that we, being dead to sins, should live unto righteousness: By whose stripes ye were healed
1 Peter 2:24
Hello Friends,
Happy Easter! Our family hopes that you all had a wonderful day enjoying your family and celebrating the fact that Jesus our Lord is risen!
Life has been pretty busy around here. I seem to include that line on a lot of my updates. Of course, we are still walking on clouds with the news that no evidence of neuroblastoma was detected in any of Morgan’s scans and tests. We are feeling very blessed. One week from today, Morgan, Grandma Vicky and I will be departing for NY City so that Morgan can have her eighth round of antibodies. Of course, we are not looking forward to this trip because it means two weeks of being separated from our family. But, I must look at it this way – we are very fortunate to be able to go and get this treatment. I can name so many families who would give anything to be in the position that we are in right now. So many of our Caringbridge friends are facing trials and tribulations that are our worst nightmare. We are thankful that Morgan is in remission and she is able to get another round of what we feel is a lifesaving treatment. Thank you dear Jesus for all you have done in our lives.
I cannot believe that we have been doing antibodies for a year now. Morgan started her first cycle of antibodies on April 14, 2003. Last year on Easter, we were in NY. We spent a wonderful day on Long Island with Jerry’s cousin Doug and his wife Kim. I was very thankful to be home this year on Easter.
What have we been doing to occupy our time for the last week? We have done a lot of Easter activities. Morgan’s class had a party and egg hunt. I took the day off of work so that I could attend. I am glad I did. It is so good to watch Morgan be a normal child. On Saturday, Grandma Vicky and Paw-Paw came over and the kids dyed Easter eggs. This was our first experience with this. It was messy but lots and lots of fun. We only did 10 eggs and that was plenty. Today we went to the Sunrise Service at Mom and Dad’s Church, Hopewell Moravian. I love this service. Morgan’s day got off to a bad start because we parked too close to the playground and she was very upset when she had to attend the service rather than play. She and I had to leave the service early because her behavior was so “unladylike”. Holden lasted through most of the service, but then he decided to explore the cemetery and his daddy brought him to the car not long after that. Jerry and I left church wondering why we did not take the kids to a service where some type of childcare was provided. Holden behaved about as well as you could expect a two and a half year old. Morgan’s behavior left us totally frustrated.
Actually, Morgan’s behavior has been the topic of our conversations quite a bit lately. We have spent so much time focusing on the physical aspects of her health and in many ways the emotional and mental aspects have been overlooked. Her childhood has been far from typical and there may be some issues that we need to address. She is a bit spoiled. This is probably pretty common for children who have experienced life threatening illnesses. Also, she is very stubborn and strong willed. I think she gets this from her father but he disagrees. It is also very difficult to reason with Morgan. These may be very common things for children her age, but these things may be more pronounced in Morgan due to all she has had to deal with since her cancer diagnosis. Jerry and I discussed it after we left church today and decided that maybe we should seek counseling for her. She has a regular clinic visit the week after we come home from NY. I plan on discussing these things with her oncologist at that time.
We have currently undertaken a new adventure at the Barnes house. We are potty training Holden. I had forgotten how much fun this is – NOT! We have only been at it for a week, but I am not really seeing where a lot of progress is being made. I was not expecting this to happen overnight. At least my expectations are being met. We shall see how this transpires.
I am assuming that I will do our next update from NY after Morgan has her first antibodies treatment. Until, then we just plan on enjoying some family time together and rejoicing in all the wonderful things that our Lord has done for us.
Prayer Requests:
1) Please pray for our friend, Trey. He has relapsed with neuroblastoma and is having a very tough time right now. We also have a new friend. Walker is a little boy from South Carolina who was diagnosed with neuroblastoma in September of 2003. His parents had some questions about 3F8 Treatment. We spoke on the phone last week and they are super nice people. Please pray for the Lord to guide their decisions in determining what to do next in terms of their son’s treatment.
2) Ask the Lord to never again all cancer to grow in Morgan’s body.
3) Pray for the Lord’s protection to be upon us as we travel to NY next week.
4) And please don't forget about all the other Neuroblastoma Warriors.
ATTENTION ALL GOLFERS:
The Second Annual Morgan Barnes Golf Tournament will be held on July 23, 2004. Go ahead and mark your calendars. There will be more details to follow.
God Bless,
Allison
Saturday, April 3, 2004
UPDATE APRIL 7,2004
We just heard from Dr. Kushner. Morgan's bone marrow also showed no evidence of neuroblastoma. JESUS IS ALIVE AND CONTINUES TO PERFORM MIRACLES.
On year ago (April 8, 2003) we received the report that Morgan's bone marrow still had cancer cells in it, even after seven rounds of chemo and a stem cell transplant. All of those who were following our story last year, know how completely devastated we were. And here we are one year later and Morgan is in remission. Thank you Jesus. And thank all of you for your faithful prayers for our family.
Update April 5, 2004
Here is a copy of the email I received from Dr. Kushner today:
CTs and MIBG show no neuroblastoma. Results of BMs - later this week.
Praise the Lord! God is good -- all the time. We give our Lord full credit for the miracles He has performed in Morgan's body. We continue to pray that her bone marrow results will be great too and He will forever protect her from this hideous disease.
Thank you for your faithful prayers!
There are new photos in the photo album!
Hello Friends,
Home Sweet Home! Our plane touched down in Greensboro this afternoon around 4:00. It was a short trip, but we are still completely exhausted. I am not sure how we will adjust to the time change tonight. We will be feeling it tomorrow morning when we roll out of bed to go to church.
Okay a quick overview of the trip for everyone! And, I guess I should apologize for not doing one each day while we were gone. For some reason, I just felt like waiting until we got back home. This type of trip is very stressful and it is much easier to write about now that it is over. We arrived in NY around dinner time on Wednesday night. We checked into our room at the RM House and did not do much else. I think Jerry was kind of surprised by how happy Morgan is when she first arrives in New York. We got a pizza and relaxed for the rest of the evening. On Thursday, we had to be at clinic around 9:00. Morgan was very impressed by the new clinic and so were her parents. It is super nice and Morgan loved the new playroom. We spent a while waiting so it was great that the toy room kept her entertained. Morgan was checked out by the nurse practitioner and cleared for anesthesia. Then she had her port accessed. The first test on the agenda was a CT scan. It did not get underway until about 12:15. It was hard for Morgan to go without eating for this whole time, but she handled it very well. She was sedated fairly quickly and the scan did not last that long. Morgan was then wheeled up to the ninth floor procedure room and she had her bone marrow samples drawn. She woke up from these procedures fairly angry. We had to take her down to the second floor for her MIBG injection. Morgan loudly expressed her displeasure. This probably does not come as a surprise to anyone who is reading this. I can’t say that I blame her though, she was hungry and had just been sedated. Not to mention the fact that she had four large needles inserted into her hips to remove samples of her bone marrow. We had to wait a bit for nuclear medicine to administer the MIBG injection. This is a radioactive isotope that will adhere to any neuroblastoma cells that are present so that they can be detected on a scan 24 hours later. After the injection, we were able to leave clinic and hit the town. Morgan has discovered the American Girl Place, which she calls the “fancy doll store”. I can see this place playing a roll in our future trips to the Big Apple.
On Friday, we were able to sleep in because we did not have to be at the clinic until 1:00. Morgan was scheduled for the MIBG scan at 2:00. Once again, she was not allowed to eat, and once again she handled it like a mature little lady. This scan started pretty much on time and took close to two hours. It was more difficult for Morgan to wake up this time, but when she did she was in a pretty good mood. We did not do much Friday night other than get a bite to eat and stop by a small toy store to pick up a gift for Holden. Then, we got our things all packed up to leave.
And here it is Saturday night and we are home. The four of us are sitting in the family room watching Duke play UConn in the final four. Holden is playing with some toy cars, Morgan is telling us frequently that she wants to watch something else, Jerry is pulling against Duke (oh the shame of it), and I am typing this update. Life has quickly returned to normal. All four of us are very happy to be in North Carolina together as a family. Holden keeps calling me Mamaw (grandma) which Jerry thinks is funny.
We do not have any test results back yet. I will certainly let everyone know something soon after we know.
I would like to thank everyone for praying for us while we were in NY. We could certainly feel your prayers carrying us. There was only one time when I got really really anxious. A few minutes prior to Morgan’s CT scan, I took her to the potty. She told me that she was hungry and her neck hurt. I asked her where it hurt and she pointed to the back of her neck. For a brief period of time, Satan played with my mind and convinced me that she has some type of tumor on her spine at the base of her neck. This was really the only time something like this happened. For the most part, I felt the peace of God during the trip. Thank you all so much!
Prayer Requests:
1) Ask the Lord that all test results will be in Morgan’s favor.
2) Ask the Lord to never again all cancer to grow in Morgan’s body.
3) And please don't forget about all the other Neuroblastoma Warriors.
NEW FUNDRAISING NEWS:
Our friend, Khalita , is doing a fundraiser during the Lenten Season. She is sponsoring several families and asking others to donate to assist these families with medical expenses. Our family is featured. I am not asking specifically for donations for our family, but I would like for you to click here and consider making a contribution to one of these families. Having a child diagnosed with a life threatening illness is debilitating in so many ways. One of these ways is financially. Most people who declare bankruptcy in the US do so because medical expenses have left them unable to support themselves financially.
God Bless,
Allison
Monday, March 29, 2004
Hello Friends,
The last week has been pretty uneventful for us here at the Barnes house. There is really not much at all to report. Morgan and Holden are over their colds for the most part. Every now and then I hear a sniffle or a cough, but I think they are feeling pretty good. I have been dealing with a case of pink eye (wonder where that came from). But overall, we really have nothing to complain about.
The highlight of our week was definitely yesterday. We took the kids to the NC Zoo with our friends, the McLeods. The weather was awesome and the kids had a terrific time. The last time I went to the zoo, Morgan was 2 and Holden was only 6 weeks old. It was hot, even though we went in November. Morgan got disinterested about half way through and it seemed like all we did was walk and walk. I think I vowed on that day that I would not return to the zoo until neither of the kids needed to be in a stroller. Well, yesterday’s trip renewed my faith in what a wonderful place the zoo can be. We did take our double jogging stroller, but it was still a wonderful day.
As you know, we are gearing up for our trip to NY. We will fly out on Wednesday afternoon at 12:45. Morgan will have a CT scan and bone marrow aspirates/biopsies on Thursday. On Friday, she will have an MIBG scan late in the afternoon. We are not going to leave NY until Saturday. She will also have a urine test at some point. (For those of you new with neuroblastoma, there is a test that can detect tumor load in the urine. There are actually two tests VMA and HVA). Holden will be staying with Grandma and Paw Paw while we are gone. I am certain that I will miss him a lot more than he will be missing me. He will be very happy to have Grandma and Paw Paw all to himself. I am just looking forward to getting this trip behind us.
My dear friend, Heather, is organizing a prayer vigil to keep us covered in prayer the entire time Morgan is undergoing all of her scans and tests. This is what she wrote in our guestbook:
I know there are a lot of prayer warriors that cover the Barnes all the time but I was wondering if maybe we could do a prayer vigil for April 1 & 2 (Morgan's scans). If anyone is interested in doing this email me at hmcleod@bbandt.com or call me 336-650-9835. I know the Lord is hearing all of our prayers but I am sure this is a very stressful time in the Barnes household. God Bless!
Just to add a little detail to the prayer vigil, we are trying to get people to sign up for 30-minute intervals (or more if you feel led) from 8:30 am on Thursday - 5:30 pm on Friday of this week. If you want to sign up during any of this time just send me an email. For those who live in the area we are going to meet to specifically pray during actual scan times if you are interested (but you don't have to live in the area to sign up and pray). Hope to hear from some of you! Thanks and God Bless
It means so much to us to know that our family is going to be continually lifted in prayer the entire time Morgan is going through these tests. Thank you from the very bottom of our hearts.
I guess that is about it for now. I will try to do another update on Thursday after the CT scan and bone marrow aspirate/biopsy.
Prayer Requests (same as last week);
1) 1) Ask the Lord to bless Morgan’s upcoming scans. Ask Him to reveal to us that she is still in remission.
2) Ask the Lord to never again permit cancerous cells to start growing in Morgan’s body.
3) Ask the Lord to protect Morgan, Jerry, and I as we travel to NY on March 31 for Morgan’s scans and tests. Also ask Him to be with Holden while we are separated from our son.
4) And please don't forget about all the other Neuroblastoma Warriors.
NEW FUNDRAISING NEWS:
Our friend, Khalita , is doing a fundraiser during the Lenten Season. She is sponsoring several families and asking others to donate to assist these families with medical expenses. Our family is featured. I am not asking specifically for donations for our family, but I would like for you to click here and consider making a contribution to one of these families. Having a child diagnosed with a life threatening illness is debilitating in so many ways. One of these ways is financially. Most people who declare bankruptcy in the US do so because medical expenses have left them unable to support themselves financially.
God Bless,
Allison
Monday, March 22, 2004
Hello Friends,
We have made it through another week and scans are one week closer. I can certainly say that I feel your prayers. My anxieties have lessened somewhat. Don’t get me wrong – I am still dreading them and am so ready to get them over with, but the power of prayer is helping me to not be a complete and total nervous wreck.
It seems as if each time I get on Caringbridge, I discover more sad reports. One of our friends from NY, Robyn, lost her battle to neuroblastoma on March 17. Cam’s family just recently learned that he has relapsed He is a fellow neuroblastoma warrior from Florida. I adopted his website to follow soon after Morgan was diagnosed Trey relapsed a few weeks ago and is now experiencing significant amounts of pain. Trey was treated at Duke and MSKCC, just like Morgan. All of these cases are truly heartbreaking. So many sweet children are struggling with childhood cancer. So many wonderful families are in the midst of pain and agony beyond belief. Please keep these children and their families in your prayers.
Morgan is slowly recovering from her cold. Her eyes are not pink and yucky anymore. She still has a runny nose and a cough. Holden has the same thing and so does Jerry. As a cancer parent, it sure does make me feel good when my “healthy child” gets the same thing that my survivor has. It reassures me that this has nothing to do with cancer, but is just a normal childhood thing. I was practically dancing when Jerry started coughing! Now, I am just sitting back and waiting for the same thing to hit me.
I finally got the results from the tests that Morgan had at her last checkup on March 4. Her echocardiogram proved to be normal. Praise be to God. Her tetanus titer is still a bit low. This means that we will wait awhile and retest. As soon as those numbers come back high enough, we will discuss having Morgan reimmunized. This is really not that big of a deal because she has a medical waiver that will allow her to start kindergarten without the normal childhood immunizations. This proves something that I have known for awhile. Morgan’s immune system has not rebounded as quickly as many other children who go through autologous stem cell transplants. This is no surprise since she has been through seven rounds of antibodies and still not achieved HAMA. Kids that have HAMA are able to “fight off” the treatment antibodies. There have been so many kids who started treatment right around the same time Morgan did and got HAMA a lot quicker. I am not complaining. I know that the Lord will take care of Morgan according to His own perfect plan. She will get HAMA when He is ready for her to get HAMA.
Today, I took Morgan for a speech evaluation at the hospital. She has been in speech therapy for enunciation issues since August. Within the last four months, she has developed fluency issues. She stutters. This was pretty much confirmed by the speech therapist today. Her previous enunciation issues are much better. The therapist today recommended that we speak with her speech teacher and have her start working with Morgan on fluency rather than enunciation. She also determined that the right side of Morgan’s face is weaker than the left and she moves her tongue rather slowly. These two issues do not seem to be causing significant problems for Morgan, but they are not surprising considering the nature of the disease that once invaded her body.
Prayer Requests:
1) Ask the Lord to bless Morgan’s upcoming scans. Ask Him to reveal to us that she is still in remission.
2) Ask the Lord to never again permit cancerous cells to start growing in Morgan’s body.
3) Ask the Lord to protect Morgan, Jerry, and I as we travel to NY on March 31 for Morgan’s scans and tests. Also ask Him to be with Holden while we are separated from our son.
4) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING NEWS:
Our friend, Khalita , is doing a fundraiser during the Lenten Season. She is sponsoring several families and asking others to donate to assist these families with medical expenses. Our family is featured. I am not asking specifically for donations for our family, but I would like for you to click here and consider making a contribution to one of these families. Having a child diagnosed with a life threatening illness is debilitating in so many ways. One of these ways is financially. Most people who declare bankruptcy in the US do so because medical expenses have left them unable to support themselves financially.
God Bless,
Allison
Sunday, March 14, 2004
Hello Friends,
First, let me apologize that it has taken me so long to update. We have been busy. I would be lying if I said that everything is normal. It is not normal because scans are right around the corner. In fact, our lives are pretty tense right now. These scans and tests are constantly on my mind, and I think they are on Jerry’s too. I will be enjoying life as normal and then all of a sudden, the thought creeps into my mind, “what if we discover that Morgan’s cancer has returned?” If I make plans, it is always knowing that everything in our lives is subject to change depending on the results of Morgan’s scans and tests. Things had gotten so tense around here that on Wednesday I decided that we were going to go to the beach for the weekend. We just got back today and it was wonderful. It was a very short vacation. We left Friday after Jerry and I got off work and returned this afternoon, but it was still great. We went to Myrtle Beach and while we did not make it to the ocean the kids still had a wonderful time swimming at the indoor pool of our hotel. Plus, we enjoyed a terrific afternoon at the Pavilion complements of the fine folks at Give Kids the World who gave Morgan a world passport, which entitles us to free admission at numerous amusement parks throughout the country. I cannot honestly say that Morgan’s upcoming scans were totally out of my mind, but it sure was nice just to take mini vacation.
Morgan has been experiencing some minor issues with her health. I guess the term “minor” is relative because everything that happens to her fills my mind with concern and worry. On Tuesday night, Morgan woke up vomiting. We are still not sure what caused this. We kept her out of school on Wednesday, but she never got sick again. Then on Friday, she woke up with her eyes matted together and a very nasty runny nose. I took her to her pediatrician just to have him look at her ears. Since Morgan has already experienced some loss of hearing, we have been told to really stay on top of her ear situation and try to catch all ear infections early. Morgan does not have an ear infection, but she does have pink eye. We have been putting those drops in her eyes all weekend and it does not seem to be much better. Of course, she missed school in Friday too. Her eyes are still red and have mucous so we are not sure if she will be able to return to school tomorrow or not.
Our family has welcomed a new member. Morgan and Holden have a new cousin. Seth Logan Pitts was born on March 10. On Thursday, we went to the hospital to see him. He is cute and very tiny. Morgan seemed interested in him, but Holden did not really notice. If anyone reads this who was a patient at the Womens Hospital in Greensboro, I apologize for how loud they were. We only stayed for 20 minutes, and I am certain that everyone there was more than ready for us to leave. I think that Morgan is so used to being in hospitals that she acts like she would at home, and Holden is just a wild man everywhere he goes. We are so sorry for the uproar caused by the Barnes Family. It is going to be quite a while before my children go visit someone in a hospital. For that matter, I prefer that we all just stay out of hospital altogether.
On a much sadder note, I learned that another Neuroblastoma Warrior has relapsed. Sophia has already started chemo again. As a cancer parent, we hold so much hope in the kids who are doing well and rejoice in their victories. Of course, their setbacks are heartbreaking to us. Please pray for Sophia and her family. Pray that she will once again become cancer free and will stay that way forever.
On Wednesday, I found out that Morgan is still HAMA negative. This means that she will have another round of antibodies. We will be returning to NY on April 19. This was not a surprise to us and as you know, I feel pretty comfortable still being in treatment. I am sure at some point I will start praying for Morgan to develop a HAMA, but I have not gotten to that point yet.
Prayer Requests:
1) Pray that Morgan’s upcoming scans and tests will reveal that she is still in remission. Ask for the Lord to grant Jerry and me His peace to deal with all of the anxiety that is associated with scan time.
2) Pray that all of Morgan’s recent health problems are just normal childhood things and in no way an indication that something is seriously wrong with her.
3) Pray that Morgan will get over this cold and pink eye thing quickly and that she will not develop an ear infection.
4) And please don't forget about all the other Neuroblastoma Warriors.
NEW FUNDRAISING NEWS:
Our friend, Khalita , is doing a fundraiser during the Lenten Season. She is sponsoring several families and asking others to donate to assist these families with medical expenses. Our family is featured. I am not asking specifically for donations for our family, but I would like for you to click here and consider making a contribution to one of these families. Having a child diagnosed with a life threatening illness is debilitating in so many ways. One of these ways is financially. Most people who declare bankruptcy in the US do so because medical expenses have left them unable to support themselves financially.
God Bless,
Allison
Thursday, March 4, 2004
Happy Birthday Paw-Paw (March 5)!!
Hello Friends,
Today was actually a pretty good day for us. We started off with a trip to Lewisville School for Morgan to attend speech class. Morgan was in a terrible mood this morning. When she woke up and saw that I was still at home, I think she thought it was a weekend day and she would not have her normal weekday duties. She said that she only wanted to go to clinic and not to speech class first. I dropped her off and I could hear through the door that she started enjoying herself very quickly. As soon as class was over and her classroom door was opened, Morgan walked out of the room with a huge smile on her face. Then, she saw me. A scowl came to her face as she said, “I told you I did not want to come to school. You were supposed to take me to clinic.” She is too funny!
After speech class, we went to Baptist Hospital for a routine clinic visit. As we were driving through the parking deck I was thinking about the “feel” that clinic visits have to them now. They are so much more laid back and casual. There is no panic wondering if my neutropenic child is going to be exposed to some germ and be placed inpatient. There is no pulling myself out of the car thinking that I can’t possibly endure another day in the cancer world. There are no sympathetic stares from strangers as they see my daughter’s bald head and think how glad they are to not be walking in my shoes. Instead, clinic visits now have a reunion feel to them. We get the opportunity to see the people who helped bring Morgan to the point she is at today. I get to hear them all remark about how much hair she has and how good she looks. Today, I glanced at Morgan’s paperwork and saw the words, “neuroblastoma follow-up”. We are now at a place that I could not even comprehend back in August of 2002. Today was a day of rejoicing and praising the Lord for all of the blessings He has granted this family. And only by the grace of God, will things remain so good for our family.
Morgan had an echocardiogram today. She has one every six months because some of the chemo drugs she received have been known to cause heart damage in patients. She will eventually have them once a year and then every other year for the rest of her life. When I asked when the results would be in, they said sometime today but they would not let us leave the hospital if something terribly bad showed up. I am assuming that since no one notified us, everything is okay. Although I hate to assume anything . . .
Morgan’s check-up went fine. Dr. McLean said she seemed to be doing great. He completed her kindergarten health assessment forms. She had blood drawn for her HAMA test and a tetanus titer. Her vial of blood is currently on the way to New York City. It will be tested on Tuesday and we will know if we are supposed to return to MSKCC on April 19 for Morgan’s eighth round of antibodies. My guess is that she is still HAMA negative and another round of antibodies is in her future. The tetanus titer is the first step in determining what will need to be done in terms of Morgan’s immunizations. I am supposed to call them tomorrow to find out this information.
After clinic, we met up with Daddy and went out to lunch. Then we had to make a quick trip by my office to pick something up that I forgot yesterday. The school nurse was there so this was actually a productive trip. The kindergarten assessment form calls for a vision screening. This is not something that generally falls under the expertise of an oncology clinic. Therefore, this part was left blank on the form and I assumed that I would need to call the regular pediatrician to get one scheduled. However, Nurse Sell was able to do this for us in my office. It took all of five seconds. Morgan has perfect 20/20 vision.
After all this, we had some time to kill because it would be an hour or so before Holden’s class woke up from their afternoon naps. I knew that it would be best for everyone if Holden had the opportunity to take his complete nap. So what do two girls do who are looking to kill some time? Why, have their nails done of course. This was great mother/daughter bonding time.
When we finally arrived at Holden’s school, his class was out on the playground. Morgan was very excited to be back on a playground at Medical Center Childcare. She was even more excited when she realized that many of her old classmates were out there too. Her best buddy from her days in the Lions classroom, Courtney, saw her and you would never have known that these two have not seen each other in eighteen months. They played just like old times. We stayed at school for an extra hour while the kids enjoyed the playground on a day when the temperature was close to 80 degrees. It filled me with such joy to watch Morgan in the place she should have been. She was back in a familiar world and loving it. Of course, my eyes slightly welled up with tears when I thought about the fact that Morgan never should have been forced to leave this world. I wondered what my eyes would have seen on this day if I had never heard the word, “neuroblastoma” back in the summer of 2002. Would I have stood with true appreciation and watched my children experience the joys of a playground on a warm day? Or would I have busily rounded them up and told them that we had to hurry home to cook supper, do laundry and all the other “important” tasks that we are faced with. I am sorry to say that it probably would have been the latter. Again, the Lord shows me so vividly how much we are blessed.
After we arrived home, we located Daddy and returned to the park to get in some more playground time. We came home to a supper of hotdogs for the kids and peanut butter and jelly sandwiches for the adults (Jerry and I have given up meat for Lent) and sat out on the patio to eat. Now, we are sitting in the family room. Toys are spread out all over the house, the laundry is running over, I have a comprehensive exam coming up March 19 that I must pass to get my Masters degree that I should be studying for, and life is really really good at the Barnes home.
Prayer Requests:
1)Ask the Lord to continually bless our family. Ask Him to protect both of our children and grant them long and healthy lives in His service.
2)Pray that all of Morgan’s upcoming scans and tests will reveal the miracle that the Lord has performed in her body and there will be no evidence of disease.
3)And please don't forget about all the other Neuroblastoma Warriors.
NEW FUNDRAISING NEWS:
Our friend, Khalita , is doing a fundraiser during the Lenten Season. She is sponsoring several families and asking others to donate to assist these families with medical expenses. Our family is featured. I am not asking specifically for donations for our family, but I would like for you to click here and consider making a contribution to one of these families. Having a child diagnosed with a life threatening illness is debilitating in so many ways. One of these ways is financially. Most people who declare bankruptcy in the US do so because medical expenses have left them unable to support themselves financially.
I am planning on doing another update next week as soon as we get the results of Morgan’s HAMA test. Thanks so much for remembering our family in your prayers.
God Bless,
Allison
Tuesday, March 2, 2004
NEW PICTURES POSTED IN THE PHOTO ALBUM ON FEBRUARY 29.
Hello Friends,
Wow! It is already March. Spring is right around the corner and the weather in North Carolina actually feels like warmer days are on the way. Last week, we had another snow episode. Some parts of the state received up to 14 inches. We did not get nearly that much here (more like 5 inches), but the weather was warm enough over the weekend to melt almost all of it away. I am ready for Spring and hoping for no more Winter Weather Advisories to roll across the bottom of my television screen.
There is not a lot to report this week. Morgan is doing great. She is eating us out of house and home these days. I had no idea she could put away this much food. I think she is eating more now than when we had to put her on megace, an appetite stimulating steroid, after transplant. I am anxiously awaiting our trip to clinic on Thursday to see if she is finally tipping the scales at 40 pounds. Holden is terrific too. He loves preschool now. There for awhile, he was crying every morning when Jerry dropped him off. I am happy to report that now he only cries if his beloved, Mrs. Tonjua, is not in the room. We have started calling her Holden’s surrogate mother because he is so attached to her. It makes me feel so good to know how much love he feels while he is at school. He is learning a lot too. His only problem is that he is not allowing the other children to learn their shapes. Whenever they are having group time, Mrs. Tonjua will ask a child what a particular shape is and Holden will answer regardless of who she calls on. Mrs. Tonjua told us that she has resorted to bribery. He is smart like his big sister. When Morgan was in Mrs. Tonjua’s class, she used to lead the group in circle time if Mrs. Tonjua had to step away for a moment. Morgan liked to teach, Holden just likes to blurt out the answers.
Jerry and I are doing well too. We are staying busy, but it is a good busy. It is a busy that is like the busyness of other parents of preschoolers. We are so fortunate that our days are not occupied by trips to the oncology clinic, inpatient hospital stays, drawing blood from central lines, or hooking up IV nutrition. These days we are transporting the kids to school, dance classes, the Little Gym. We are planning vacations and not making plans for moving to Durham while our child receives a bone marrow transplant. As good as life is, there is always a fear looming in the back of our minds. What if this beast decides to consume our precious daughter’s body once again? What if the scans she is having in April are not clear? What will we do if Morgan relapses? I think we are doing a good job of living in the present. I think we both try really hard to not spend too much time being consumed by the “what if’s”? We both pray a lot and ask for the Lord’s protection over both of our children. Of course, we have no guarantees. But then again, no one does. We know that whatever happens to us, our Lord Jesus Christ will be there to carry us through it. Thank you God!
Please join us in praying for Morgan:
1) Ask for the Lord to continue to bless our family with two healthy children. Ask Him to never permit cancer to grow in Morgan’s body again.
2) Pray for Morgan’s scans in April to reveal no evidence of disease.
3) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING NEWS:
Our friend, Khalita , is doing a fundraiser during the Lenten Season. She is sponsoring several families and asking others to donate to assist these families with medical expenses. Our family is featured. I am not asking specifically for donations for our family, but I would like for you to click here and consider making a contribution to one of these families. Having a child diagnosed with a life threatening illness is debilitating in so many ways. One of these ways is financially. Most people who declare bankruptcy in the US do so because medical expenses have left them unable to support themselves financially.
What is next? Morgan has a clinic visit on Thursday. It will probably be a fairly long visit as there is a lot to cover. They will draw blood for HAMA, we will schedule her echocardiogram and other tests that she has ever six months after transplant, I am going to ask them to complete her enrollment forms for kindergarten, and we are going to discuss the re-immunization process. Morgan will probably have to have all of her childhood shots again, as the bone marrow transplant probably wiped out her body’s memory of them. I will do another update on Thursday after this visit. Until then, please continue to keep our family in your prayers.
God Bless,
Allison
Tuesday, February 24, 2004
NEW PHOTOS HAVE BEEN PLACED IN THE PHOTO ALBUM
Hello Friends,
I just want to start off by saying that Morgan and I are ecstatic to be back home in North Carolina. Morgan and Holden have been happy playing together and are overjoyed to be reunited. I am enjoying being in my own home and sleeping in my own bed. Morgan has jumped back into her busy lifestyle full throttle. On Sunday, we went back to Sunday school. My child who refused to go just a few short months ago has made a complete change. When I picked her up on Sunday, the teacher said that Morgan had “a lot to say and had an example for everything she said”. I could not tell for sure if the teacher was thrilled with this, but it sure made me happy knowing that she has come out of her shell to some degree. On Monday, Morgan returned to preschool and tonight she went back to dance class. I have also jumped back into a busy lifestyle. I am still trying to come out from under all the paperwork that piled up on my desk while we were in the Big Apple. Also, there was mail to be sorted, emails to be checked, and phone calls to be made. I am beginning to see a light at the end of the tunnel. But, all in all this makes my life seem pretty normal which is a good thing.
We had a family gathering on Sunday to praise the Lord and celebrate the fact that Morgan is now one year out of transplant. Morgan and Holden both had a wonderful time. The only fallout from this event is that Morgan believes that it was her birthday and she is now five years old. When I was growing up, my parents gave me a porcelain doll each year for my birthday. They were “Growing Up” dolls and each one had a number on it to commemorate my age. And no, I don’t get one anymore because I don’t need a doll to remind me of how old I am, I feel it everyday. These dolls are displayed in my parent’s house and Morgan is now presented with one each year on her birthday. She know they belong to her, but that she must wait until she ages another year before she can take the next one home. Morgan was not very happy yesterday when she announced to Grandma that she is five now and therefore needs the number five doll. Grandma told her that it was not her birthday and she is still four. Morgan was adamant about this and really really wanted that doll. Grandma was about to cave in and let her bring it to our house when I asked her about birthday presents. She did not receive presents at the party on Sunday, instead we asked people to bring a video or DVD. These items will be presented to Brenner Children’s Hospital in Morgan’s honor to help bring some joy to other children who are staying in the hospital. I think Morgan finally realized that it could not have been her birthday because she did not receive presents. So, the doll is still safe at Grandma and Paw-Paw’s house waiting to be brought to Morgan’s bedroom on July 25, when Morgan turns five.
As you may know, I had to take Morgan into clinic today for a blood count because her white count was really high on Friday before we left the Big Apple. Thanks so much for your faithful prayers; Morgan’s white blood count was totally normal today. This was a big relief to us. Sunday after Morgan’s party, she was complaining that her legs hurt. This made me worry even more. On one hand, I wanted to believe that her legs hurt her simply because she played hard all day long. But, in the back of my mind I was wondering if this had something to do with her elevated white blood count. My mind was eased today. Morgan has not complained of leg pains anymore so hopefully (prayerfully) this was due only to the fact that she had an incredible time just being a little girl on Sunday.
Prayer Requests:
1) Pray that Morgan will experience no further leg pains. This puts us in such a state of worry, but so many times we have heard of children with neuroblastoma relapsing after experiencing pain in the legs.
2) Pray that the Lord will grant Morgan complete and total healing. Ask Him to protect her body and to never again allow cancerous cells to grow in her.
3) Pray that all of Morgan’s scans and tests that she will have in April will show no evidence of disease.
4) And please don't forget about all the other Neuroblastoma Warriors.
NEW FUNDRAISING NEWS:
Our friend, Khalita , is doing a fundraiser during the Lenten Season. She is sponsoring several families and asking others to donate to assist these families with medical expenses. Our family is featured. I am not asking specifically for donations for our family, but I would like for you to click here and consider making a contribution to one of these families. Having a child diagnosed with a life threatening illness is debilitating in so many ways. One of these ways is financially. Most people who declare bankruptcy in the US do so because medical expenses have left them unable to support themselves financially.
A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
Since we are enjoying a fairly normal and routine life again, I probably will not update as often as I did when we were in NY receiving daily medical treatment. There is just not that much going on and I do not want to bore everyone. I truly thank all of you for being a part of our lives. You have been there for us through thick and thin. I know that you rejoice in our triumphs and were saddened at the bumps we had along the way. I will do another update in a week or so as long as things stay fairly routine. I guess I should end with the request, “Pray for everything to stay routine”. Thanks for the love that you show our family through your faithful prayers.
God Bless,
Allison
Friday, February 20, 2004
UPDATE: FEBRUARY 21, 2004
We just wanted to let everyone know that we arrived home late last night. Morgan and Holden were overjoyed to see each other. Morgan stayed up late last night getting reacquainted with her toys and videos. Morgan is acting like she feels terrific and she is looking better by the minute. I think that 3F8 always makes her look tired and causes dark circles under her eyes. That is not a look that a cancer parent likes to see on her child.
Thanks so much for praying for our safe return home. Please keep praying about Morgan's white blood cell count. She has an appointment Tuesday at clinic here in Baptist to check it again. Please ask the Lord that it be within normal range. I will do an update after this appointment.
God Bless,
Allison
Dear Friends,
Happy One Year Post Transplant Anniversary Morgan! We are so proud of how far you have come in the last year. We love you and give God all the glory.
When the alarm clock went off this morning at 6:00, my first thought was, "only 12 more hours and we are out of this city". Morgan told everyone at clinic this morning that she was heading home to see her daddy and her brother and she and her brother take turns watching videos. I guess that means she is planning on being a couch potato after we get home.
We had a wonderful evening last night. The kind folks at Elizabeth Arden Red Door Salon came in for a night of beauty treatments at the Ronald McDonald House. Mom and I each had a manicure and haircuts. Morgan was signed up to do both also. She decided to skip the manicure when she realized they would remove the pink nail color that she is currently wearing. The Little Princess was totally against the haircut from the start. I honestly think she is afraid that she is going to lose all of her hair again and therefore will not let anyone come close to it with a pair of scissors. It has taken a year for her hair to get to the point it is at now, so if she wants to keep it then that is okay by me. I only wanted to get it shaped up a little bit, but for the time being I am going to give her total control of her hair.
Today's treatment was much better than yesterday's. Suzie, the dance therapist came in to work with her today. She helps Morgan get relaxed using music, scarves, and musical instruments. Morgan really gets into it. With Suzie's help, Morgan only needed one dose of dilaudid today and her attitude was somewhat better. She is still having some fits, but I think we can get her through them with talk of going home. Right now she is adamant that we not put her toys into the suitcase. I guess we will go toe to toe around 2:00 when it is time for the car to get here to take us to the airport.
Morgan's scans have all been scheduled now. Jerry, Morgan and I will return to NY for a short stay on March 31. On April 1, Morgan will have a bone marrow biospy and CT scan. On April 2, she will have an MIBG scan. And hopefully (prayerfully) we will be returning to NC on April 3, celebrating the fact that Morgan is still cancer free.
As I was walking back in the room following treatment today, the phone was ringing. I knew it had to be the hospital calling us because all of our family members know that we will make contact after we return to the room. Well, I was right. It was a nurse practitioner. It seems as if there is a problem with Morgan's white blood count. On Wednesday, her ANC was 19.8. They told me to go ahead and give her the GMCSF shot on Thursday because the cutoff is 20. On Thursday, it was 24.1 and her white count was around 30,000. Therefore, she did not have to get a GM shot today. But, her blood work revealed that her white count is continuing to rise. Today it was around 51,000. They want us to take Morgan in next week to make sure that it starts going down. I have no idea what all this means, but I know from past experiences that nothing abnormal is fun. I am trying to get in contact with Morgan's doctors at home to schedule blood work for next week. I find it kind of ironic that one year ago today Morgan had her transplant and we were crying out for her white cells to "grow, grow, grow" and here we are a year later crying out for them to "stop, stop, stop". This is just another example of how there is always something to worry about. And it is also another example of something we need to take to the Lord in prayer.
Prayer Requests:
1) Pray that Morgan's white blood count will return to normal and this will not be an indication of bad things happening in her body.
2) Ask the Lord to protect us in our travels today.
3) Ask God to use Morgan for His glory. Ask Him to bless her with a long and healthy life in His service. Ask Him to never allow neuroblastoma to invade her body again.
4) Ask the Lord to bless Morgan's scans and tests in April. Ask that they reveal to us no evidence of disease.
5) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
We are planning on spending the weekend at home enjoying being together. I will plan on doing another update after Morgan has her blood counts checked next week. Thanks so much for continuing to lift up our child in prayer. There is power in prayer and our family is still in need of a lot of it.
God Bless,
Allison
Thursday, February 19, 2004
Hello Friends,
The server is finally up and running here at the RM House. I am sorry that I have not been able to do an update. But, truthfully there has really not been that much going on other than treatment. Treatment has been painful for Morgan each and every day. Today was the worst. She needed three doses of diluadid to get through it. Morgan is the most content when she is just hanging out in the room in the afternoons. She enjoys playing with her toys and watching videos. It has been boring to say the least, but I would rather be bored than be screamed at by a drugged up four year old. Whenever Grandma or I make her mad, she calls us "buffer old girls". I am not sure where she got this, or what it means, but I know that she certainly means business when she is saying it. It is hard not to laugh when she is calling me this, but laughing just makes things worse. Cracking a smile while Morgan is on one of her tirades is kind of like laughing in the face of a drill instructor. But, I am happy to report that it does not take her nearly as long now to come down from these highs. Even today after three doses of dilaudid, she was behaving somewhat normally after being in the room for about 30 minutes. In the past, her episodes have lasted for hours at a time. She used to have to sleep it off, but now she can come down while staying awake. This makes bedtime easier at night because she is always good and ready to go to sleep.
Our bags are packed and we are counting down the hours until we are headed South. In approximately 24 hours, a car will arrive at the RM House to take us to the airport. Our plane does not leave NYC until 6:00. We have a connection in Detroit, so we will arrive in Greensboro around 11:00. That is late, but we don't care. We are just looking forward to sleeping in our own beds tomorrow night.
Morgan's next set of scans and tests have been tentatively scheduled for the first week of April. I am going to try to get exact dates before we leave the hospital tomorrow. Please join us in prayer regarding this issue. Please start praying now that the Lord will bless all of Morgan's test results. Ask Him to show us that there is no evidence of neuroblastoma in Morgan's body.
I will try to do an update tomorrow before we leave the RM House. But if I don't get around to it, I promise there will be one written from HOME SWEET HOME on Saturday. Tomorrow, Februrary 20, Morgan will celebrate her one year post transplant anniversary. We praise the Lord for all He has done for us. God is good . . . all the time.
Prayer Requests:
1) Ask the Lord to provide us with a guardian angel to be with us on our trip home tomorrow.
2) Ask the Lord for continuous protection for Morgan's body. Ask Him to never again allow neuroblastoma cells to grow in Morgan's body.
3) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
God Bless,
Allison
Monday, February 16, 2004
Update: Wednesday, February 18, 2004
The server is down at the Ronald McDonald House in NYC. Everything going according to schedule. Allison will do an update as soon as possible. Morgan is tentatively scheduled for scans during the first week of April. Please pray that they will bring us good news. Thanks for checking up on us and for your prayers and God bless you.
Hello Friends,
We are happy to say that we had a wonderful weekend. It got off to a great start on Friday when we received a phone call stating that Morgan's white count was high enough that we could hold off on the GMCSF shot on Saturday. Of course, Morgan tried to convince me that she did not need one on Sunday either. But, she did. However, today at clinic her ANC was over 20 again, so she got to skip today's shot too. That always makes Morgan happy. I am thinking that she will probably get one tomorrow, but it would be nice if she did not need it once again.
The Lion King was absolutely fantastic on Saturday. When we arrived at the theater, Morgan asked for me to buy her a program. I was kind of worried at first when she flipped through it and told me that there were no pictures of the Lion King in it. I guess in her four year old mind, she was expecting to see Disney cartoons. I hoped that she would not be disappointed when she realized that there would be no cartoon characters appearing on stage. Well, she was certainly not disappointed. She loved the play and even told me that she liked it better than Beauty and the Beast. On Saturday night, she was singing her favorite Lion King songs at the top of her lungs. Grandma and I reminded her that she needed to use her inside voice and she said, "I am the American Idol!". Needless to say we got a kick out of that.
We had plans on Sunday just to get out of the room and do something. We walked out of the door of the RM House and quickly changed our minds. It was very very cold outside. We ended up coming back to the room and staying put. Morgan watched videos which made her happy. It was boring, but it was way too cold too venture out anywhere. It was also very cold today. My face felt like it was frozen as we walked to clinic this morning. I have heard that it is supposed to start warming up tomorrow. This news certainly does not disappoint me.
Today's treatment was nothing out of the ordinary. I thought we would make it through with no pain. And then, halfway through the flush the pain started. It was pretty intense. She needed one and a half doses of diluadid to get through it. Our day at clinic was longer than normal today because they had a computer problem in the pharmacy. Everyone was delayed in getting their meds. After Morgan's treatment, we had to hustle out of there to make room in our bed for another patient. Morgan was not too happy about this. She was in one of her "I want to stay" moods. She cried as we left, but it was not one of her worst fits. She was still angry when we got back to the room, but she seemed to get over it fairly quickly. The treatment cough has returned. When I left the room to come down here she was sitting on the floor playing with Polly Pockets and hacking away.
We are now at the point where we are counting down the days. Four more days of treatment and then it will be time to go home. I am just looking forward to returning to our somewhat normal lives. I love for our lives to not revolve around clinic visits.
Prayer Requests:
1) Ask for the Lord to continue keeping us safe and be with us on our flight home on Friday.
2) Pray for the Lord to use Morgan's treatments to His glory. Ask Him to never again permit cancerous cells to grow in her body.
3) Pray for the Lord's blessings over Holden while I am away from him. I am happy to say that he has adjusted well to his preschool now and is very happy every morning when he arrives. But, he has been angry with me since last week and refuses to talk on the phone with me. I wish so much that I did not have to be separated from him. But the good news it that he will quickly forget his anger when we are together again on Friday.
4) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
Thanks for checking in with us and I will do another update tomorrow.
God Bless,
Allison
Friday, February 13, 2004
Hello Friends,
Ah . . . Friday Sweet Friday. We are now officially on the downhill slide. This time next week, we will be packing our bags and making the final preparations for our trip back home to beautiful Lewisville, North Carolina. I must admit though, this week has gone by rather quickly and boy are we thankful for that.
Morgan had another great night last night. The RM House brought in some more musicians and Morgan once again felt like performing for the crowd. This time she just danced rather than singing too. She had a terrific time. Do I have a future Rockette on my hands? Speaking of which, does anyone out there know if they do any other shows besides their Easter and Christmas performances? I am sure Morgan would love to see them, but we could not get tickets at Christmas. Perhaps Easter will be a possibility.
Yesterday must have been some sort of fluke day. Morgan had pain today. It was not tremendous pain, but it was enough that we could tell it was for real. Today when she asked for pain medication we knew she needed it and was not asking for it out of habit. She made it through treatment with one dose of diluadid and then was ready to return back to the RM House. She was completely wiped out today. She certainly did not have the energy to complain about anything. She relaxed in her stroller on the way back, and now she is in the room relaxing and watching her new Dora video. This is the ONLY video that she has wanted to watch since we bought it. Grandma and I are kind of sick of it, but if it makes Morgan happy then we can live with it.
As far as Morgan's cough. . . it was a bit worse throughout the day and then in the early evening it went away. She coughed a few times before she went to bed, but it was barely noticeable. Of course, I asked about it today at clinic and they said that coughs are a very common side effect of 3F8/GMCSF cocktail that she receives and since it came and went, they are fairly certain that this was the cause. Another reason to praise God. Worrying is so easy, but so is praising the Lord when we realize that there is nothing to really worry about. Last night, this was on my mind as I prayed and I realized that I had prayed many times regarding Morgan's cough throughout the day. The Lord wants us to depend on Him, and to not worry. At times that is much easier said than done, but I have felt Him carrying my burdens so many times since Morgan was diagnosed with cancer. I am so glad He has done that for me. And I am so glad that we have so many people in our corner praying for us.
We are looking forward to two days off from clinic. We have tickets to see The Lion King tomorrow. Morgan loved Beauty and the Beast so I am hoping she will feel the same way about Lion King. I am looking forward to sleeping in for the next two days and not having to put Morgan through the pain that goes along with treatment. Of course, I remember the Friday night we were here in October and Morgan fell and broke her leg. Please keep her in your prayers and ask for no more surprises such as this.
Our other prayer requests are:
1) Ask God to continue watching over us while we are away from home.
2) Ask for His blessings over Morgan's treatments. Ask Him to use these treatments to give Morgan a complete and total cure.
3) Ask for the Lord to send a guardian angel to watch over Holden while we are away from him.
4) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
I will probably not get around to doing another update until Monday after Morgan's treatments. I hope all of you have a wonderful Valentine's Day. Give a extra hug and kiss to your sweeties and your children. I will especially be missing my sweetie tomorrow (Jerry if you are reading this I love you very much and miss you tremendously) and my baby (Holden I love you sweet fellow. I hate being away from you but you know that I am always thinking of you). Thanks so much for checking in with us and for continuing to keep our family in your prayers.
God Bless,
Allison
Thursday, February 12, 2004
Hello Friends,
It was one year ago today that Morgan checked into Duke Hospital to start the very long process of her stem cell transplant. I am so thankful for where we are right now. God has certainly been with us throughout this entire ordeal. We have felt the touch of His hand nonstop for the last eighteen months. We praise His name!
Yesterday, Morgan ended up taking a very long nap. She was having some residual pain from treatment because she was moaning and groaning in her sleep. I also noticed that she had a few hives on her arms. I dosed her up with Tylenol and Benedryl. When she woke up, she was in a terrific mood. The RM House provided dinner last night and she was a ball of energy once again. She stayed up until about 10:00 and then she was out until this morning. This round of treatments have certainly been a bit easier on us and her mood is not nearly as bad after treatment is over.
Today was a very new experience. Morgan did not have much pain at all during treatment. She asked for one dose of diluadid but I am not even sure if she needed it. Morgan is a creature of habit and she is used to asking for medicine so therefore she thought she needed it. Tomorrow I am going to have them hold off or pretend to be giving her medicine so we can tell if she is really having pain or not. I certainly do not want her receiving any narcotics if she does not really need them. Her mood has been terrific all day. We went to St. Catherine's Park immediately after treatment and then we went to McDonalds for a Happy Meal. She ate and then asked to come down to the toy room to play a little. We may even try to get out and do something this afternoon. I am very interested in whether or not she has pain tomorrow. No pain could mean that she is developing HAMA and that would be the end of treatment. I guess that is a bridge we will cross when we get to it.
I am a bit concerned about Morgan's cough. She has had a cold since December, but for the most part so have the rest of us too. Right before we left to come to NY, Morgan and Holden both developed coughs. Morgan's has gotten a lot worse in the last few days. She is coughing a lot today. It seems to be worse when we are in the room than when we are out and about. I will certainly inquire about it tomorrow while we are at clinic. It would not even hurt my feelings if they wanted to do a chest x-ray. It is best to be safe. There is always something to worry about. If I did not have things to worry about, what would I think about!?!
Prayer Requests:
1) Ask for the Lord to take Morgan's cough away from her. It is very bothersome. She seems to be feeling okay, but I would feel much better if this cough were to totally disappear.
2) Ask the Lord to keep us safe while we are away from home.
3) Ask for the Lord's blessings over Morgan's treatments. Ask Him to use them for His glory and to totally rid Morgan's body of this horrible disease forever.
4) Ask for the Lord to bless Holden with a spirit of contentment while I am away from him.
5) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
We have almost made it to the end of our first week of treatment. Thanks so much for lifting us all in prayer. I will do another update tomorrow.
God Bless,
Allison
Wednesday, February 11, 2004
Hello Friends,
We have made it over the hump of the first week; two more treatments this week and then we will get a break for two days. The time seems to be flying by a little quicker than usual. This is a blessing from God. Some of the credit for this is due to the company of our friend, Renae. Unfortuately, Renae will be returning back to NC today since we have heard that they may be receiving MORE SNOW at home tomorrow. What a bad winter we have had in North Carolina! Hopefully, we will get no white stuff up this way.
We hit the town last night. We stopped in a small toy store and Morgan picked out a new Dora video for herself and a Thomas the Tank Engine car for Holden. Then we took a taxi towards Midtown Manhattan and walked around. Mom, Renae and two other friends make an annual trip to the city in December and they wanted to scout out a better hotel than the one they have used for the past few years. They found one they liked so the trip was a success. Morgan was riding along in her stroller and then she started screaming out in pain. This was a bit scary (all of you cancer parents know exactly what I am talking about). She said that her tail hurt. We finally were able to figure out that she needed to use the bathroom. We found a restaurant, she took care of business, and then felt much better. Of course, we then had to eat at the restaurant because you can't just use a bathroom without patronizing the restarant. Morgan fell asleep in the booth while we ate and she slept until we returned to the Ronald McDonald House. We got back to the room, she watched her video, and then we went to the Carribean Heat party. That was probably the most fun I have ever had at a party here at the RM House (and they have had some good ones). There was a guy singing reggae music and he sounded a lot like Bob Marley. Morgan loved it. She danced and danced and danced. At one point, she decided to sing too. She took the mic and sang "Twinkle Twinkle Little Star". There was nothing shy about Morgan last night. She was in such a great mood after her nap and it was really terrific to see.
Today's treatment was very ordinary. I briefly thought that Morgan was going to make it through the entire process without any pain. But, it came on towards the end and she still needed two doses of diluadid to make it through. She did not want to leave clinic today. She pitched a fit, but it was very small in comparison to some of the fits I have seen her pitch in the past. She is now in the room resting and watching her new Dora video. I am hoping that she will fall asleep because that is really the only thing that makes her feel better.
Prayer Requests:
1) Pray for the Lord to protect us while we are away from home.
2) Ask the Lord to bless Morgan's treatments. Ask that cancer never be allowed to return to Morgan's body and she live a long and healthy life in His service.
3) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
Thanks so much for continuing to check Morgan's progress. This journey has been made so much easier because we know that we have so many friends out there who are praying for us each step of the way. I will update the page again tomorrow.
God Bless,
Allison
Tuesday, February 10, 2004
Hello Friends,
Two days of treatment down and eight more to go! Yesterday continued to be a rather uneventful day. Morgan had her ups and downs. She would be fine for a little while, and then be not so fine for a little while. She really surprised me in that she did not take a nap at all. But, it worked out well in the long run because at 9:00 sharp she climbed in the bed and quickly fell asleep. We did not hear a peep out of her until I woke her up this morning to get her ready to go to clinic. She was in a great mood when she woke up and ready to go back for another day of treatment. It always amazes me that she never refuses to go to clinic even though it is such a hard treatment.
I think today's treatment was a little better than yesterday's. She required two doses of diluadid for pain control. Last night, she had a few hives which is a side effect of treatment. Her face also turned a bit pink at the end of treatment today. Therefore, she got an extra dose of medicine to help out with that. This kept us at clinic a few extra minutes. When we left clinic, she wanted to go to St. Catherine's Park. We took her and she was pretty temperamental while we were there. She was not in the best mood, but we were trying to keep her happy. Just prior to having a complete and total meltdown, Grandma made the executive decision to remove her from the park. Morgan was not a happy camper, but she got over it fairly quickly.
The drugs have been affecting Morgan a little bit differently this time. She is not angry for long periods of time like usual. This time the spells are coming and going. She will be fine for a bit, and then something will set her off. She will be angry for a few minutes and then it will completely pass her by. In some ways it is better, but in others it is a liitle more difficult because she is more unpredictable. She is actually down here in the computer lab with me right now. She is bringing me stuffed animals and showing them to me. Currently, her mood is good and hopefully it will last for a while.
Morgan has decided not to have a nap again today. We are planning on getting out and about tonight and hopefully will be able to make it to a toy store to pick up something for her.
Overall, the last two days of treatment have gone smoothly. Morgan is eating very well and her attitude seems to have matured a bit since the last time we were in NY. Mom was last with us in October and she says that she can see a real difference in how Morgan handles the treatment. I am certainly proud of my Little Hero.
I am also proud of my big boy at home. Holden is adjusting well to his new school and Daddy reports that it is getting easier to drop him off every day. I talk to Holden every night on the phone and he "tells" me about his day. I miss that little guy so much!
Prayer Requests:
1) Ask for the Lord to continue to bless our trip. Ask Him to keep us all safe.
2) Ask for the Lord to use Morgan's treatments to His glory and have them allow Morgan's body to stay cancer free forever.
3) Ask for the Lord to watch over Holden and help make this time easier for him.
4) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
One year ago today we received the phone call that it was time to report to Duke to begin Morgan's transplant. Wow! We owe so much to all of you who have stood by our sides during this incredible journey. Your prayers have made such a difference in our lives and we thank your for continuing to pray for us. I will do another update tomorrow.
God Bless,
Allison
Monday, February 9, 2004
Hello Friends,
Greetings from the very cold city of New York! We arrived yesterday afternoon. The flight was very uneventful and things have gone pretty smoothly so far. Thank you all for lifting us up in prayer and asking the Lord to provide us with safe passage up here.
Our family enjoyed five more wonderful days at home together before Morgan, Grandma Vicky, and I departed on Sunday afternoon. We went to the circus, which thrilled both of the children. On Saturday, we celebrated the one year birthday of Morgan's "girl cousin", Rachel. Morgan truly adores Rachel and we had a very pleasant time at her birthday party.
We spent most of yesterday in route to the Big Apple and today saw us returning to clinic after eight long weeks being away. Morgan was pleased to see everyone, at least as pleased as Morgan can get. She has never been one to be sentimental or anything. Morgan's counts were fabulous. Everything was well within the normal range except for the white count which was high due to the daily GMCSF injections. But, they are supposed to be high so that was wonderful too. Morgan is growing like a weed. She has grown 2 centimeters and gained 2 pounds since we were in NY in December.
Today's treatment was very typical for a Monday. Mondays are generally a little bit longer than other days because Morgan has to get her GMCSF shot while at clinic and then we have to wait for an hour after the shot to start treatment. Mondays are also usually more painful than other days. Morgan's body has to get used to receiving the treatment again. It took three doses of diluadid to get her through today's treatment. She behaved very well while we were leaving clinic. I think that all of the energy was just zapped out of her and she was really just too tired to scream and yell. We got back to the room and she watched TV for a while. Then she decided that she was ready to go to St. Catherine's Park (just a perfect activity for a cold winter day in New York). My feelings were not hurt when she announced that I had to stay in the room to take care of her doll, Mary. Morgan was very moody by this point and even the slightest things were sending her into major meltdown. For example, she got angry at me because the bathroom light was left on. She screamed for several minutes because the tag on her panties was on the side and not in the back. Apparently, it took being high on diluadid before she realized where the tag was, but once she did, man was she angry! She got extremely frustrated while putting on her mittens. She finally got herself in a state to leave, and she and Grandma took off. It is my hope that Morgan will fall asleep in the stroller and the trip to St. Catherine's can be cut short. She is really in no state of mind to be out and about. Plus, it is COLD COLD COLD out there.
Overall, today was a good day. Treatment is behind us and we have nine more days of it before this round is finished. We have had some really hard days and today was not that hard. Praise the Lord! God is good . . . all the time.
Tonight Grandma's buddy, Renae, is flying up to visit and we always enjoy seeing her. Renae just recently retired from USAirways so we are going to have a mini-party this evening. I know the last time Renae visited it sure helped the time pass a lot quicker. And I remember the last time she visited that Morgan fell and broke her leg the day after she left. Hopefully, any scenes like that can be avoided on this go round.
Prayer Requests:
1) Ask the Lord to continue to bless our trip. Ask Him to allow Morgan's treatments to be effective and for them to forever rid her body of neuroblastoma.
2) Ask for the Lord to bless our loved ones who are still at home. I especially ask for prayer on behalf of Holden. It is hard for him to have to be away from Morgan, Grandma, and myself while we are gone. Pray for the Lord to give him a spirit of contentment.
3) And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
I will do another update tomorrow. Thanks so much for faithfully checking Morgan's site and for praying for her and the rest of our family.
God Bless,
Allison
Tuesday, February 3, 2004
Hello Friends,
Another week has passed us by and here we sit just five days before we depart for New York City again. It has been another fantastic week for us. We have had such a great time this eight weeks that we have been home since the last treatment. It is going to make it even harder to get on the plane on Sunday, but in my heart I know that these trips are very necessary for Morgan. Tomorrow morning I will start the regimen of GMCSF shots in order to prepare her body for 3F8 treatment. She will receive a shot each day until February 20 (her last day of antibody treatment). This is never fun, but again we feel as if it is a necessity.
What have we done in the last week? We had snow days most of the week last week. I finally went in to the office towards the end of the week. I really did this more to get out of the house instead of to get work done. I took Morgan with me and she had a ball going to Southeast "Little" (it is really Middle but I have not corrected her because she is just do darn cute when she says little) School. On Saturday, we celebrated Grandma Vicky's birthday which was actually yesterday (February 2). And then on Sunday we watched the Superbowl. We cheered very hard for the Panthers and are very proud of how well they played. Yes, we wanted them to win but considering two years ago they lost 15 games and the team is only nine years old, we still LOVE OUR PANTHERS and are confident that they will make Superbowl appearances in the future.
Morgan had another hearing test today. It was discovered that there is further minimal loss in the highest frequency in her left ear. But, she improved a little in the next highest frequency in the same ear. Therefore, there were no significant changes in her hearing. Plus, she had a new test today that she has never had before. This one required that a small device be placed in her ear and they measure her hearing based on the vibrations of her ear drum. This test revealed totally normal results. This was great news since sometimes this test detects hearing loss before it can be detected with manual tests. Obviously, we were happy about these results and once again give God all of the glory. Of course, we will still continue to have her hearing checked on a regular basis. From what we understand, it is unlikely that she will experience any further hearing loss because it usually occurs within the first 12 months after chemo is administered. Morgan will be celebrating her one year post transplant anniversary on February 20.
The only concern that the audiologists had today was concerning Morgan's speech. Jerry and I have noticed it too. It seems as if she has developed a slight studder. When she is trying to talk, she gets so excited that her mouth just does not move as quickly as her brain. She has a hard time getting the words to come out. I am going to get her an appointment with the speech therapists at the hospital so that she can be evaluated. Morgan already participates in speech classes with the school system. Her classes mainly emphasize word formation. Morgan does not put her tongue in the right place when she says certain words. For example, "together" is "togever". I believe the assessment she has through the hospital will be more intense. Of course, if there is a problem we would like to get it solved prior to her starting kindergarten for socialization reasons. But, we both feel that this is the small stuff and nothing compared to all she has had to endure in the last 18 months.
Something interesting did happen to me this weekend. I was going through a drawer looking for something and I found an old prayer journal from 2002. For some reason, I casually flipped it open and scanned a entry for January 5, 2002 (seven months before Morgan was diagosed with cancer). Apparently, that day on TV I had watched one of the St. Jude's fundraising shows. My entry said, "I pray Lord for healing for all of those kids with cancer. Thank you for my own two healthy children. Please allow them to stay healthy because I am not sure if I could survive something like that." To be honest, when I first saw that the air was knocked out of my sails. For a brief second, I questioned God. I thought, "I prayed for healthy children and Morgan was diagnosed with cancer less than one year later." But the longer I thought about it the more I realized that God brought me to this journal entry for a reason. He showed me that I survived something that I had no idea I could make it through. And how did I survive it? Only by His love and through the power of prayer. He carried me each step of the way and your prayers helped make that possible. I thank each one of you from the bottom of my heart. I truly believe in the power of prayer. I know that no matter what lies ahead for Morgan and the rest of our family, the Lord will be there for us to carry us through. His love is the most amazing thing and He is so good . . . all the time.
The next time I do a journal entry it will probably be from the Big Apple. Please remember us in your prayers in the following ways:
1) Ask for the Lord to bless our journey. Guide us to NY safely.
2) Allow for Morgan's treatments to be effective. Allow them to do His work and keep her totally free from cancer for the rest of her life.
3) Please remember to ask God for healing for Morgan's friends who are suffering from cancer. Harrison is starting chemotherapy again this week. Ask for the Lord to be with him during this. Carl needs prayers asking for the Lord to rid his body of this disease for a second time. Trey is dealing with a possible relapse. Ask the Lord for healing for this child and for strength for his family. And please don't forget about all the other Neuroblastoma Warriors.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
As always, we thank you so much for checking in with us and for remembering our family in your thoughts and prayers.
God Bless,
Allison
Tuesday, January 27, 2004
FEBRUARY 1 - NEW PHOTOS IN ALBUM!
Hello Friends,
It is once again time for a weekly update. And once again, there is nothing very exciting going on at the Barnes house. We are thankful that God is blessing us with happy times together.
We have been snowed in together since Sunday. Actually, Jerry just left for work a few minutes ago but the kids and I are still homebound. It has been very nice to have nothing to do and nowhere to go. I must admit though that it is causinng me a bit of stress because since I have not been working, I am not getting my internship hours in. And if I do not get those 300 hours in, I do not graduate, regardless of the fact that I have been previously employed as a school counselor since February 2001. This is stressful because I will be leaving for NY in two weeks and therefore will be able to get zero hours during that time. I need to have all of my hours in by the end of April. It is very possible that we will be making another trip to NY for treatment the last two weeks of April (not to mention the trip we will take in March so Morgan can have scans and tests). We have decided that if April rolls around and I do not have my hours, then Grandma and Paw-Paw will be taking Morgan to NY for treatment in April. I am going to train Mom on how to give Morgan shots during our next trip. That should be fun. I guess all of these words lead back to the fact that I am ready for the snow and ice to melt so that I can return to work and get my internship hours taken care of.
Enough about me and internship hours. Morgan is doing great. She still has traces of a cold and a runny nose, but other than that her health seems to be perfect. We are certainly blessed by the Lord. She continues to enjoy preschool and dance class, although I think the weather is going to prohibit her from attending dance class tonight. I received the kindergarten enrollment papers and have already filled them out. They are supposed to be delivered to Lewisville School on February 13. Daddy will have to take care of this for us since we will be in NY on this date.
I cannot believe that last year at this time we were getting ready to head into transplant. Morgan had her central line placed on January 31 and we checked into Duke on February 12. This last year has flown by and I praise God everyday for how well Morgan is doing. However, as I have said many many times, neuroblastoma is a very nasty disease with a high relapse rate. Therefore, we continue to pray that the Lord will continue to allow Morgan to experience good health. Unfortunately, things can change with this disease in a matter of days.
Holden is still adjusting to his new school. He cries a lot when he is dropped off and clings to his daddy. However, when I pick him up he always seems to be having a good time. He seems to be behaving typically for a child his age.
In less than two weeks we will be leaving for New York for Morgan's seventh round of antibodies. I always have mixed feelings about these trips. I am ready for Morgan to be out of treatment and I hate having to be away from Holden and Jerry for such a long time. But, I am also NOT ready for Morgan to be out of treatment. There is something very comfortable in the fact that she is receiving treatment that hopefully is seeking out any remaining NB cells in her body and destroying them.
For the next two weeks, we are just planning on enjoying family time together. Of course, this weekend we will be watching the Superbowl and cheering for our Carolina Panthers. I think Morgan has an appointment next week to have her hearing tested. Other than that, we have no plans.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
Prayer Requests:
1) Ask the Lord to bless our upcoming trip to NY. Ask that He provide us with safe passage there and back and successful treatments for Morgan.
2) Pray for the Lord to protect Morgan's body from this horrible disease forever. Ask that He never again allow cancerous cells to grow in her body.
3) Please remember to pray for all of the Neuroblastoma Warriors.
I am pleased to be bringing you another update with no real news. All is still well with us and we are very thankful to the Lord.
God Bless,
Allison
Tuesday, January 20, 2004
Hello Friends,
Another week has passed so it is time to do an update. I am actually sitting here in front of the computer wondering what to write about. Once again the Lord has blessed us with a glorious week of relatively good health, happiness, and being a normal family.
My last update stated that there was nothing going on with Morgan medically other than a cold. Well, the cold persists but Holden and I still have ours too. I have decided that Morgan's nose is just going to run forever. But, if that is the only thing going on with her we will certainly take it. On Wednesday, we noticed that Morgan had a rash on her arms. It resembled an accutane rash but we knew that could not be the case since she has not been on accutane for quite a while. Well, I must say that I am proud of how we handled it. We did not consult with any medical professionals at all. We decided to just watch it for a few days and then ask the medical experts if necessary. Well, the rash has pretty much run its course and Morgan never once acted like it was bothering her. She had eczema before she was ever diagnosed with cancer so we are fairly certain that the dry winter air just caused some sort of flare up for her. Imagine that, Morgan had a slight medical issue and we did not have to call a doctor. We are rejoicing over life's little miracles. We are coming to a point where our lives are not dominated by medical issues. Thank you Jesus!
This weekend we enjoyed cheering our CAROLINA PANTHERS on to victory. Our boys are going to the Super Bowl. This is such sweet relief after sitting back watching them lose 14 games in one season. I know this is certainly not a very important issue, but it is what our family did this weekend.
Morgan continues to exert her independence. We are very proud of the young lady that she is becoming. She is growing up quickly. One of my favorite things that she has been doing lately is whenever I tell her to do something that she does not agree with, she informs me "That is not the Amish way." Apparently, she saw something on TV about the Amish and it intrigued her. Also apparent is the fact that she really does not understand the Amish way, she just likes to talk about it. She has also become Paw-Paw's girl in the last few weeks. I think my dad is getting a kick out of her telling Grandma that she is going to spend personal time with Paw-Paw and she is NOT invited. For so many years, Morgan has been an "I want my Grandma" girl. Again, this is a sign that she is changing in fabulous ways. I think our prayers have been answered and socially she should be ready for kindergarten next year. Of course, we continue to pray that her health will remain good so that kindergarten will be in her future.
Holden started his new school today and did very well. Miss Tonjua said that it took him about an hour and a half to realize that his daddy had left. Apparently, he was involved in some serious fun and it took him a while to miss Jerry. After realizing he was alone, he cried briefly but other than that he joined right in with the activities of the class. This includes the turn he took sitting on the potty. The child is going to force me into working on potty training before I am ready to even think about it. I wanted to avoid the issue until he turn 2 and a half in March, but I don't think he is going to wait that long. I think we are going to rethink waiting until March and perhaps start after we run out of our current supply of diapers. Wow, my kids are really growing up quickly. When I picked Holden up after work, he was all smiles and it was obvious that he really enjoyed his day. We are once again singing the praises of Medical Center Child Care.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
Prayer Requests:
1) Ask the Lord to bless our upcoming trip to NY. Ask that He provide us with safe passage there and back and successful treatments for Morgan.
2) Pray for the Lord to protect Morgan's body from this horrible disease forever. Ask that He never again allow cancerous cells to grow in her body.
3) Please remember to pray for all of the Neuroblastoma Warriors.
All is still well at the Barnes house. We are praising the Lord each and every day for the blessings that He is sending our way. Thanks for faithfully checking in with us and remembering our family in your prayers.
God Bless,
Allison
Tuesday, January 13, 2004
Hello Friends,
It has been a week since I have updated the page. There is absolutely nothing exciting going on here in Lewisville, NC (Praise be to God!)
Morgan is feeling better than I have seen her feel in a long time. Her spirits are high, she is happy most of the time, she is eating well, and basically we are all enjoying these days very much. And of course, we are praying a lot that these good days last for a long long time. She is currently taking no medications, other than the daily supplements we give her. It is almost unbelievable. She still has a cold. Actually, I think she has a second cold. Sometimes I look at her in amazement and think, "Wow, the only medical issue she has right now is a cold!"
Occasionally she complains that her feet hurt, but this is nearly always accompanied by a "you need to carry me." She will run, play, and dance for hours and then when I ask her to do something she can't because her feet hurt. I think the Little Princess has learned a thing or two about how to manipulate Mommy and Daddy over the last year and a half.
Okay, so what has been going on for the last week? Morgan and Holden have both been attending preschool regularly. We have been thinking and praying a lot about their school situations. We decided to put Holden back in a full time daycare program. Things just kind of fell into place for this one. A slot opened up at Morgan's former daycare at the hospital (where Jerry works) and it was in Miss Tonjua's class. Miss Tonjua was Morgan's teacher when she was diagnosed and she has stuck by us with such love throughout this whole thing. She still considers Morgan "her girl", even after Morgan being out of her class for over a year. We could not pass up this opportunity for our son. Plus, this gives him some consistency in his life on the days that Morgan and I are in New York. And, I will be working a lot of hours the next two semesters. I am currently doing my counseling "internship" even though I have been employed as a school counselor for three years now. I have required internship hours that I must complete in order to graduate. And since I started on this degree in August 1998, I would finally like to get it behind me. I would like to take this opportunity to thank Medical Center Childcare for all they have done for us since Morgan enrolled there in the summer of 2001. We are looking forward to having another Barnes child enrolled there.
We have also made the decision to send Morgan to Lewisville School for kindergarten next year and have started the enrollment process. Morgan attends speech class there now, and loves it. It was actually her decision and we are sticking by it. I can not believe that I am starting the kindergarten enrollment process for Morgan.
What else have we done? Friday was a snow day. I stayed home from work and built a snowman with the kids. It was standing just long enough for me to snap a picture of the kids standing with it before Holden knocked it down.
FUNDRAISING NEWS: A dear friend of mine from college, Joyce Sugg, sells Stampin Up supplies. She has graciously offered to donate all of her profits for the next two months to help cover the costs of Morgan's medical treatments at MSKCC, which are not covered by our insurance. If you are interested in purchasing from her or would like more info, you can click on this link Stampin Up . Joyce's email and other relevant information is provided in this link.
Prayer Requests:
1) Ask the Lord to bless our upcoming trip to NY. Ask that He provide us with safe passage there and back and successful treatments for Morgan.
2) Pray for the Lord to protect Morgan's body from this horrible disease forever. Ask that He never again allow cancerous cells to grow in her body.
3) Please remember to pray for all of the Neuroblastoma Warriors.
I just love doing updates that are about colds, snow days, and school choices. Thank you for continuing to check in with us and for the love that you have shown our family. Most of all we thank you for you constant prayers on behalf of Morgan.
God Bless,
Allison
Tuesday, January 6, 2004
Hello Friends,
Dr. Kushner's secretary called me this afternoon to inform me that Morgan is still HAMA negative. This means that her body has not yet built up a resistance to the antibody treatment. Therefore, she will receive a seventh round of 3F8. Actually, Jerry and I are rather pleased about this. I can't explain it but there is just something that feels comfortable about still being in treatment. I must admit though, it would be great to not have to take such long trips to New York City. We feel confident that the Lord will give Morgan the exact number of treatments she needs. Right now we feel very blessed.
Morgan, Grandma Vicky, and I will be departing for the Big Apple on February 8. Morgan will begin round seven on February 9. We will fly home on February 20. This is the one year anniversary of Morgan's stem cell transplant. What a day to rejoice! We will be celebrating Morgan's new "birthday" and returning back home to North Carolina. But for now, we are just thinking about enjoying our month at home together as a family.
We have had a wonderful time this past week. We rang in the New Year with the McLeod family. Actually, that is a lie. We were not able to hang with the big dogs on New Years and we were home a while before midnight. I guess that is what happens when you get old, it becomes impossible to stay up late. Stephen and Heather are both younger than we are, so I guess they are suffering from being old by proxy.
On New Year's Day, we went to Grandma Vicky's house for the traditional New Year's meal. If you are not from the South, you may not be familiar with this wonderful meal. On New Year's Day, you must eat greens (I prefer collards) to bring you green money in the coming year. Eating black-eyed peas assures that you will get lots of coin money in the new year. Then, you round out your meal with some type of pork. I can remember my Grandma Morgan fixing hog jowls, but my mom fixed a great pork roast. In our family, the traditional meal is always accompanied by my dad's cornbread. Yes, for those of you who know my father you may not know that he makes the best cornbread. He had my Grandma Morgan teach him how to make it a few years before she passed away and I am thankful. She also taught me, but I don't think I could do as well as Dad. (On a similar note, I rejoined Weight Watchers last night!)
Our weekend was fabulous. The weather here in North Carolina was beautiful. We visited with Grandma Penny and then stopped at a park on the way home so the kids could play. On Sunday, we went to Madison's birthday party and the kids really enjoyed themselves. Morgan returned to speech class today and dance class tonight. Tomorrow, preschool will resume after the Christmas break. These are some of Morgan's favorite activities and we are thrilled that she is getting back in the swing of things.
Prayer Requests:
1) Ask for the Lord to protect Morgan and never allow this disease to return to her body.
2) Ask for blessings over our next trip to New York. We certainly do not want anymore broken legs or other unexpected events.
3) Please remember to pray for all of the Neuroblastoma Warriors.
Thanks so much for continuing to check on Morgan's progress and for remembering our little princess in your prayers.
God Bless,
Allison
Wednesday, December 31, 2003
Hello Friends,
I just heard from Dr. Kushner. It seems as if Morgan's blood was not tested yesterday. The lab called me yesterday to make sure that the blood was sent. They called at 10:40 and the UPS tracking system stated that it arrived at 10:30. This is really not a big deal because they will just keep the blood and it will be tested next week. We are not scheduled to return to NY until February 8, so not getting the results today is no problem at all.
Here I sit writing an update on the last day of 2003. I must say that 2003 has been a pretty good year for the Barnes family. There have been some terrible moments. There have been hard days, questionable test results, and tears have been shed. I guess the hardest part has been that we have had to say good-bye to friends we have made along this journey. Reece, Tyler, McKenzie, Jessica, and Jake are just a few of the special children who became angels during 2003.
All in all, I think we have created some wonderful memories in 2003. We have reached some milestones and had many reasons to praise the Lord. In January, Morgan completed the final round of chemotherapy for her protocol. In February, we headed to transplant. While these are not pleasant memories, we can rejoice in the fact that the Lord brought her through this quickly and she was discharged on Day 13. In the world of bone marrow transplants, this was miraculous. April found us making our first trip to MSKCC in New York City. We were crushed to discover that Morgan's bone marrow was still positive for neuroblastoma. So we prayed and we called on others to pray. The Lord heard our prayers and Morgan's bone marrow was clean after one round of antibodies. In May, Morgan breezed through radiation. June was a busy month. Morgan had scans and the results came back in her favor. Then, we were blessed by Make A Wish with a fabulous trip to Orlando. Our little princess turned four in July and the one year anniversary of the worst day of our lives, Morgan's diagnosis, passed us by. In August, we made a major step back to a normal life. Morgan enrolled in preschool and dance class. September brought us the second birthday of Holden, our very precious little boy, and another set of clean scans for Morgan. October came with some tense moments when Morgan fell and broke her leg. We were told this could have been caused by a new lesion on her bone. The Lord took care of us again and we learned that it was just a broken bone, plain and simple. In November, we had a wonderful opportunity to share the story of what the Lord has done for us on Fox8 News. Morgan was diagnosed with neuroblastoma seventeen months ago today. For seventeen months, we have been carried by prayer. The Lord has held our hands during the darkest moments and given us many reasons to rejoice. And here we are in December. Morgan had another good set of test results, although they were accompanied by some scary MIBG results. I am watching my children run, play, and argue just like other pairs of siblings all over the world. Morgan is happy, healthy, and enjoying life -- Praise be to God!
What do we desire for 2004? We want it to be an even better year than 2003, filled with even more happy memories. We want God to continue to protect Morgan from this foul disease and never again allow cancerous cells to grow in her body. We want every scan and test she has to come back showing no evidence of disease. Basically, we want to be a normal family that does not worry about cancer all the time. We want to Lord to bless the families of all the Neuroblastoma Warriors. I hope you will continue to pray for these things along with us.
May the Lord bless each of you with a wonderful new year! Again, thanks for the love, support, and prayer you have given our family. We love you all.
God Bless,
Allison
Monday, December 29, 2003
New pictures have been added in the photo album.
Hello Friends,
Our Christmas was absolutely fabulous. We had a wonderful day surrounded by people we love. The kids slept late on Christmas morning, and of course Jerry and I did not complain. Santa must not have been watching the Barnes children very closely, because they got a lot of stuff. But, he did bring them things that they are actually playing with. Holden is really enjoying his matchbox garage and Morgan is having a ball with her computer games. We had the chance to visit with Grandma Byrd and then we spent the rest of the day with Grandma and Paw-Paw (my parents). Morgan and Holden played hard with their cousin, Smith, for most of the afternoon and were very tired when we arrived home. They slept even later on the day after Christmas.
Things have been very uneventful around here. I just love typing those words even though I am sure it does not make for very exciting reading. I guess the highlight since my last update was on Sunday. The day started off on an high note by Morgan stating that she was ready to go back to her own Sunday school class at church. Morgan has not done this since July 28, 2002. Usually, she either goes into service with us or asks to go into Holden's class with him. She showed her independence by returning to class with her age mates and having a great time. As you know, I have had some prayer requests about Morgan's social skills. The Lord is certainly hearing those prayers and she is catching up quickly. Later on Sunday, Morgan surprised me again by going to a birthday party all by herself. This is the first time she has EVER done this. Again, she had a great time and got along well with the other children. Every night, our family gathers in the family room to read the Bible and pray. Usually, we will all share the ways we have been blessed during the day. I told Morgan how proud of her I was that she had a "big girl" day and thanked God for helping my child in so many ways. For the parents of most four year olds, these two events are not that remarkable. But for a child who has been almost totally isolated for over a year, it was a very big deal and an answer to prayer.
Today we had a very uneventful clinic visit. Clinic was very crowded. I guess they had lots of catching up to do after the holiday vacation. Morgan did not even get weighed in. They just drew her CBC and HAMA blood and we were out of there. We did not wait around for the results of the CBC. I called for them later in the day and everything was okay. Morgan's hemoglobin is 9.6, which is a tad on the low side. But, it was stable from the last time so no one was alarmed. I spoke with Dr. Wofford and again she told me that she was very relieved after hearing from Dr. Kushner in New York. Our visit today was so quick that I did not even bother to make Morgan another appointment. I am so happy that the day has come where I forget to make Morgan follow-up appointments in clinic. I guess I will call later on this week and set something up for her.
Morgan's HAMA blood was shipped to NY today and it should be tested tomorrow. I will probably know the results by Wednesday. I am almost certain that Morgan is still HAMA negative since she was still having pain with the treatments the last time we were in NY. If she is indeed negative, we will return to NY on February 8 and return home on February 20, which by the way will be the one year anniversary of Morgan's stem cell transplant.
Morgan, Holden and I are still dealing with our colds. I don't think they are ever going to go away. They are not bad anymore, just annoying. Basically, all we are dealing with now is a little bit of congestion, which seems to be worse in the morning. Hopefully, we will all be breathing better again really soon.
Prayer Requests:
1) Ask the Lord to continue protecting Morgan from cancer. Please pray that this horrible disease would never again return to her body.
2) Pray that the mysterious spot that showed up on Morgan's last MIBG scan would be totally gone the next time she is assessed.
3) There are so many other children who are fighting this beast. Please keep them all in your prayers. Click here Neuroblastoma Warriors to learn about some very heroic children.
I will do another update after I get the results of Morgan's HAMA test. As always, thank you so much for checking in with us. We truly appreciate all of your prayers.
God Bless,
Allison
Wednesday, December 24, 2003
"Do not be afraid. I bring you good news of great joy that will be for all people. Today in the town of David a Savior has been born to you; he is Christ the Lord." Luke 2 10-11
Hello Friends,
There are two reasons why I included these verses at the beginning of today's entry. Obviously, tomorrow we celebrate the holy birthday of our Lord Jesus Christ. He came into this world because He loves us. He died on a cross because He loves us. Because of this love, we have a wonderful opportunity to spend eternity in heaven with our Father.
The second reason I included this verse is because I heard it quoted at the memorial service for Jacob Aaron Courtney on Monday afternoon. One of the most difficult parts of having a child with cancer, is that you meet so many wonderful kids who never have the opportunity to become adults. Jacob was such a unique child and I could write forever about what a great kid he was. I walked into his services on Monday with my heart full of sadness. I departed from the services feeling the peace of God. It was a beautiful service and a lovely tribute to this fine young man. The Lord gave us a message 2000 years ago to not be afraid. And that message is still relevant today. Jake will be missed. But, he won the battle. I can just picture him now celebrating at a birthday party for Jesus. The Lord never promised us that this journey would be easy, but He did promise to walk with us each step of the way. God is good . . . all the time!
There really is not much to report in terms of Morgan this week. That is one of the reasons that I have not done an update. The other reason is that we have been pretty busy! She loves the Christmas season. It thrills me that she gets excited whenever she sees a nativity scene. She always exclaims, "look, there's baby Jesus". I think she is beginning to get a good understanding about why we celebrate Christmas and that there is much more to it than Santa and presents.
Dr. Wofford, our NC doctor, emailed me and said that Dr. Kushner, our NY doctor, told her basically the same thing he told us. She stated that she felt reassured that the uptake on the MIBG scan probably did not represent anything serious. As far as I know, we will continue with things as scheduled and will not repeat the scans or any other tests until March.
Tonight, we celebrated Christmas Eve with Jerry's side of the family at Aunt Dana and Uncle Jody's house. Morgan and Holden received lots of presents and were very thrilled with all of them. It was such a wonderful celebration because last year Morgan was not able to attend because her counts were just not good enough. Tonight was much better and we pray that we will never again have to celebrate a Christmas without the joy of her company.
Tonight, Santa is coming to the Barnes house. Morgan has been warned many times that we were going to have to call Santa if the kids did not straighten up. Overall, the kids have been wonderful this year and deserve to have a wonderful Christmas.
Morgan, Holden and I are all fighting a cold. We all had our flu shots so we are hoping that this is only three cases of the common cold. Mine came over me pretty suddenly and I am hoping to start feeling better soon. The kids are improving daily.
Prayer Requests:
1) Pray that this wretched disease will never again attack Morgan's body. Ask that the mysterious spot on the MIBG scan was totally harmless and will not even be present the next time she has these scans.
2) Pray for Jake's mom and dad, Chanda and Brian. They are preparing to face a year full of firsts without their precious son. This will not be easy for them and they will certainly need support from the Lord.
3) There are so many other children who are fighting this beast. Please keep them all in your prayers. Click here Neuroblastoma Warriors to learn about some very heroic children.
Our family would like to take this opportunity to wish each of you a very merry Christmas. Please take some time tomorrow to praise God for all the blessings that He has granted to you and thank Him for giving us the gift of Jesus.
Morgan has a routine clinic visit on Monday to have a CBC and HAMA blood drawn. I will do another update after that clinic visit.
God Bless,
Allison
Thursday, December 18, 2003
Hello Friends,
It has been a very long day and I am physically and emotionally drained. We had to be at the hospital at 8:00 this morning so Morgan could drink contrast for the CT scan. Then, we reported to nuclear medicine to complete the MIBG scan. Since she had to be sedated, we got a little behind schedule. When the MIBG scan was finished, we headed back to do the CT scan. Then, we went up to the clinic to get Morgan's line taken out. I must say that Morgan did an excellent job of staying asleep. I was really afraid that she would wake up very angry before all the scans were complete. She did not wake up until we went through the process of removing the line.
I am probably feeling so tired today because we were assaulted by Satan. Let me start off by giving the results of the tests that Morgan had last week at MSKCC. Her bone marrow biopsies and aspirates both came back showing no evidence of neuroblastoma. Praise the Lord and thank you so much for your faithful prayers. Her urine tests were slightly elevated. When I say slightly, I mean like one point over in each area. This still concerned us because we never want to see anything abnormal. Then something clicked in my mind. Vanilla can raise the levels of VMA and HVA in the body. Morgan was not eating well while we were in New York, so I was supplementing her diet with vanilla pediasure. I decided to put this out of my mind. This would be something to worry about only if Morgan's scans did not come back clean.
Today, after I returned to the clinic, Dr. Wofford told me she was trying to find the results of the scans. Morgan and I camped out. I decided I was not going to leave until the results were in. We waited and waited and waited. I started to feel like there might be a problem so I called Jerry and invited him to come wait with us. Since he works at the hospital, he arrived in about 10 minutes. We waited for another hour and a half before Dr. Wofford called us into one of the exam rooms. She started off by saying that the CT scan was absolutely perfect. However, (we have heard these howevers so many times) there was some uptake on the MIBG scan. This totally knocked the wind out of our sails. She showed us the scans and there it was. In almost the same spot as Morgan's original tumor, was a perfect white circle. She also showed us the CT scan section by section and pointed to the fact that nothing was there. She couldn't really explain what we saw on the MIBG scan. She told us that she would discuss it more with us after she had the chance to speak with Dr. Kushner, our doctor in New York. Morgan's hemoglobin has also dropped to 9.6. This is low and very scary to us since she has not needed any blood products since she had radiation in the spring.
We had promised to take Morgan to Chuck E. Cheese after our appointments today. And while I certainly did not feel up to going to such a fun place, a promise is a promise. We picked Holden up at Grandma and Paw-Paw's, delivered the discouraging news to them, and then called Grandma Penny to tell her. I cried and Jerry held himself together very well. While it wasn't truly bad news, it also was definitely not good news either.
I also called my dear friend, Heather, to tell her the news. She told me she would notify our church and let them know that the prayer warriors need to be called back into action. I felt the power of prayer almost immediately. I started to feel better about things and then remembered a time in April when something very similar happened. Morgan had a MIBG scan in New York that showed a mysterious spot on the right side rather than the left. It turned out to be nothing, and remembering this did bring some comfort to me.
When we got home, I immediatly composed this email to Dr. Kushner:
Dr. Kushner, Morgan had her scans here at Wake Forest today. I am sure you will be getting copies of the reports in the very near future. It seems as if the results are a bit confusing. The CT scan was perfect. There were no abnormalities to be found. The MIBG scan showed uptake in an area close to the site of the original tumor. The doctor here did not know what to make of it and of course we do not either. Should we make plans to bring Morgan to MSKCC in order to repeat the scans?
There was another issue that was brought to our attention. Morgan's hemoglobin was 9.6. She has not required a blood transfusion since the spring when she was doing radiation. As you know, she is just coming
off of a cycle of antibodies and is currently taking her last few days worth of accutane. Is it possible that either one of these two things could play a part in dropping the hemoglobin?
And finally, I have a bit of a confession to make. I may have messed up Morgan's urine test. She was not eating during that time, but I was able to get her to take Pediasure. She had three cans of vanilla
Pediasure each day in the two days preceding the urine test and on the day of the test. When Morgan's urine test came back a little high, this came to mind. I checked the packaging and it said that Pediasure contains artificial vanilla flavoring. But, I called the company that manufactures Pediasure and they said that is does contain some natural vanilla extract. If this is the case, should the urine tests be repeated.
I guess my basic question to you at this point is what do we do now?
I have the utmost respect for Dr. Kushner. He knows more about neuroblastoma than practically anyone in the world. But beyond that, his compassion knows no bounds. He replied to my email within minutes and this is what he had to say:
Pediasure can give elevated urine markers.
MIBG often gives false positive uptake in abdomen - the good CT result is important in this situation.
I hope future scans will be done here.
Overall, I feel reassured by all the results.
ENJOY THE HOLIDAY SEASON!
- Dr. K
This was very reassuring to us. We feel like the devil has been trying to convince us that Morgan will not be healed. His negative forces have been at work. And while, we do feel better about things we still acknowledge that neuroblastoma is a very tricky disease. Relapses are common and very deadly. This is why we are asking you to pray for Morgan. Please pray that this mysterious spot will disappear and will no longer cause us any worries.
Prayer Requests:
1) JAKE entered the Kingdom of God on Thursday December 18 around 9:30 pm. Please pray for strength for his parents Chanda and Brian.
2) Ask for the Lord to protect Morgan from Satan and neuroblastoma. Ask Him to never allow this disease to invade her body again and to protect us from this powerful influences that the evil one has over our minds.
3) There are so many other children who are fighting this beast. Please keep them all in your prayers. Click here Neuroblastoma Warriors to learn about some very heroic children.
Thanks so much for your continued love, support and most of all your prayers.
God Bless,
Allison
Tuesday, December 16, 2003
Hello Friends,
I know this update is a day later than I earlier stated. Sorry! But we have been really busy here.
I am happy to say that we all made it safely home on Friday night and Morgan was even more thrilled to be here than I was. She was so excited that I think she stayed awake until around 2:00 am. On Saturday, we visited with Grandma Penny and then stopped by to see Paw-Paw and Grandma Vicky. On Sunday, the snow and ice kept us home from church and also cancelled the Lewisville Christmas Parade. I really just enjoyed staying at home and enjoying my family.
Monday, Morgan had an appointment with Dr. Koman. Dr. Koman agreed with the findings of Dr. Morris in New York. Morgan's leg is completely healed and she can resume all normal activity again. In fact, she will be returning to dance class tonight. She is very excited about this.
Today, Jerry took Morgan to the dentist. This is really the only dental visit she has ever had if you don't count the pre-transplant dental examine that she had, which lasted all of forty-five seconds. Morgan does not like the dentist at all. She had to be strapped to the chair and her mouth forced open. She was in tears that entire time. She does have one cavity, but the dentist said that we could wait awhile to have it filled. Other than that, her teeth are okay. I was actually expecting them to be in a terrible state due to all the chemo she has had to endure. The dentist will see Morgan again in six months. I am sure Morgan would rather wait six years to experience that again.
Tomorrow morning I will take Morgan to Wake Forest University Baptist Medical Center. They will access her port in clinic, and then we will go down to nuclear medicine to get an MIBG injection. MIBG is an isotope that attaches itself to any neuroblastoma cells that are present (of course we are praying that there are none). On Thursday, she will have the MIBG scan. Following the MIBG scan, she will have a CT scan. Please pray that by Friday we are celebrating the good news of clear scans and no evidence of neuroblastoma in Morgan's body.
Prayer Requests:
1) Our buddy, JAKE , has taken a turn for the worse. Please pray for him and the rest of his family. His mom, Chanda, has been a dear friend to me since we met because of this wretched disease.
2) Ask the Lord to protect Morgan's body from this horrible disease. Ask that all scans and tests show no evidence of disease.
3) There are so many other children who are fighting this beast. Please keep them all in your prayers. Click here Neuroblastoma Warriors to learn about some very heroic children.
I will do another update as soon as we get the results of the various tests and scans. Thanks for praying for Morgan during this stressful time of testing.
God Bless,
Allison
Friday, December 12, 2003
Hello Friends,
Our bags are packed and we are anxiously awaiting three o'clock when our car gets here to take us to the airport. I am so happy to be going home that I could almost cry. This trip has really dragged out for us and it seems like I have not seen Jerry or Holden in months. But, we are on our way home and will get to enjoy North Carolina for eight weeks before it is time to return to NY again.
Last night, the RM House sponsored another party. However, we were not allowed to stay for very long. A band came and they were playing some really great music. Things went down hill at the beginning of the second song. A door opened and various characters came running out of a room to perform for the children. There was Elmo, Santa, and Sponge Bob to name a few. Then, the Grinch made an appearance. Let's just say that Morgan is no fan of the Grinch. He scared her absolutely to death. She was screaming out in terror and begging me to take her back to the room. By the way, Madison had freaked out long before that. She made her way into her mother's arms as soon as she saw Elmo. Since we did not want to subject our children to the this terror, we returned to the room and made the girls very very happy.
Morgan's treatment today was okay. Suzie, the dance therapist, came in to work with her again today. Morgan enjoys this and Suzie is superb at getting Morgan to relax. Because of Suzie and her relaxation techniques, Morgan was able to make it through treatment with only one dose of diluadid. Hopefully, this will make our trip home a little easier for Morgan and she will not feel quite so hung over. Since Morgan is still having pain, we are almost certain that she is still HAMA negative. We will do the official blood test on December 29. If she is still negative and all of her scans and tests come back clean, we will return to NY for round 7 of antibodies on February 9.
Prayer Requests:
1) Pray for the Lord to accompany us today on our way home and provide us with safe passage.
2) Pray for the Lord's blessing on all of the scans and tests that Morgan has had or will have. We still have not heard from the bone marrows that were drawn on Tuesday. Ask Him to reveal to us that there is no cancer in her body and to protect her and never allow this disease to invade her body again.
3) There are so many other children who are fighting this beast. Please keep them all in your prayers. Click here Neuroblastoma Warriors to learn about some very heroic children.
We are planning on enjoying our weekend at home with our family. On Monday, Morgan has an appointment with Dr. Koman so he can check out her leg. I will do another update after that appointment. Thanks for lifting us to the Lord in your prayers. We can certainly feel Him carrying us.
God Bless,
Allison
Thursday, December 11, 2003
Hello Friends,
I am certainly feeling your prayers today! We had a wonderful day at clinic. There we no emotional outbursts whatsoever. There were none during treatment and she was a perfect little angel during the ride home. I am so thankful to all of you who have prayed that Morgan would be able to tolerate these treatments. She is doing well and I thank you all so much.
As far as pain goes, today was pretty typical. She required two doses of dilaudid to control the pain. Towards the end of treatment, her face got really red so she was given a medicine like bendryl to take care of that. Otherwise, it was a very uneventful day and we were out of clinic before 11:00 am.
We have already started packing our bags for the journey home. A car will be here to pick us up at 3:00 tomorrow afternoon. Our flight departs around 6:00. Tomorrow night we will be sleeping in our own beds and we will wake up Saturday morning in our own house. I feel pretty bad for the families here at the RM House who will not be able to make it home for Christmas. The staff here does an excellent job of taking care of us all year long and they do a tremendous job on the holidays. However, we all know that there is no place like home, especially during the Holiday Season.
Prayer Requests:
1) Pray for our protection as we travel home tomorrow.
2) Ask for the Lord to never permit neuroblastoma to return to Morgan's body. Please pray that bone marrow aspirate/biopsy she had this week, the scans she will have next week, and every other test or scan that she will ever have in the future come back showing no evidence of disease.
3) There are so many other children who are fighting this beast. Please keep them all in your prayers. Click here Neuroblastoma Warriors to learn about some very heroic children.
I am not sure if I will do another update tomorrow or not. I guess it just depends on whether or not I have time to get to the computer lab before it is time to leave. If I do not get around to doing it tomorrow, I will definitely do an update from HOME on Saturday. Thanks so much for supporting our family with your love and prayers.
God Bless,
Allison
Wednesday, December 10, 2003
Hello Friends,
Morgan had a good time at the party with the New York Giants. Of course, she did not give a hoot about any of the football players (other than the one who was dressed up as Santa). She was much more interested in presents. But, she was feeling pretty good by the time the party started, so we were able to have a nice time. Madison, on the other hand, slept through most of the party. She was not interested in the Giants, Santa, or even the presents. She was tired and found a comfortable spot to sleep on the couch.
We were in and out of clinic pretty quickly today. The pain was very similar to the last two days in that she required two doses of dilaudid. Morgan did all of her screaming while she was receiving treatment and was really quiet and sleepy on the way back to the RM House. I did get a bit embarassed when she started screaming that EVERYONE in the room needed to stop talking. This occurred when Taylor's (our roommate) grandmother was having a discussion with Dr. Modak. I wanted to crawl under the bed when this happened. Of course, there was no getting her quiet. When I asked her why she could not be nice, she said that she did not want to. I guess that is an honest answer. She actually fell asleep in the stroller on the way back to the room and it was an easy transition getting her into the bed. She slept for about an hour. She seemed to wake up in a decent mood, but we will just have to wait and see if anything sets her off.
There are no parties scheduled tonight. I am actually a bit partied out so this is a pretty good thing. We are hoping to breeze through the next two days of treatment and be homeward bound Friday afternoon.
Prayer Requests:
1) Ask for the Lord to bring us home safely on Friday.
2) Pray for Holden to be granted peace and contentment.
3) Ask for the Lord to bless all of Morgan's upcoming scans and tests. Ask that He never again allow this horrible disease to invade Morgan's body.
4) Remember to ask for complete healing for all of Morgan's friends who are fighting similar battles. Pleasee say an extra prayer for our buddy, Taylor ,
who is undergoing all of his scans and tests this week. Click here Neuroblastoma Warriors to learn about some very heroic children.
Thanks again for keeping Morgan in your thoughts and prayers. I will update again tomorrow after treatment.
God Bless,
Allison
Tuesday, December 9, 2003
Hello Friends,
Today should have been our last long day at clinic. From here on out, everything should be pretty routine. The day was actually a lot easier than I thought it would be. We were able to sleep late because they did not want us to arrive at clinic until 9:00. After we arrived, Morgan got to play in the playroom. This was something that she very rarely gets to do because her treatment typically starts very early and then she is in no shape to play after treatment is complete. They were actually ahead of schedule so she was taken back for sedation around 10:00. By 11:00, she was ready to start treatment. Treatment was pretty painful. It was another two doses of dilaudid kind of day. The dilaudid on top of the sedation drugs has put her in pretty rough shape. She is very very grumpy and refusing to nap. Plus, all of the narcotics have made her itch all over. I gave her a dose of benedryl before I came down to the computer lab in hopes that it would stop the itching and allow her to rest a little bit.
We should have results from the bone marrow in about 72 hours. Please keep praying for good results. Jerry and I both get very apprehensive before any type of testing is done. Morgan has been doing so well lately, but unfortunately neuroblastoma never allows us to rest easy. Things could get bad again at any moment. This is why we are in constant need of prayer. We know that God is much more powerful than this disease and we also know that we need constant prayer for her total and complete healing. We thank all of you who have been continually praying for Morgan since this ordeal began for us almost 17 months ago,
Prayer Requests:
1) Please pray that the Lord will bring us back safely to North Carolina on Friday.
2) Remember to ask for special blessings for my precious son, Holden. I am so proud of him and the way that he takes all of this in stride.
3) Ask the Lord to reveal to us that there is no evidence of neuroblastoma in Morgan's body. Ask that His protection constantly be around her body so that this horrible disease can never return again.
4) Remember to ask for complete healing for all of Morgan's friends who are fighting similar battles. Click here Neuroblastoma Warriors to learn about some very heroic children.
Tonight we have another party on the agenda. The New York Giants are coming to the RM House. This means absolutely nothing to Morgan or Madison, but they do seem to enjoy being part of the crowd. Morgan may not feel like going since she received treatment so late today, so we will just have to see how she is doing at party time.
As always, we love you all and we thank you for all you have done for our family. We have been truly blessed by the kindness of our family, our friends, and even people that we have never even met.
God Bless,
Allison
Monday, December 8, 2003
Hello Friends,
We survived the blizzard. Now there is just old, dirty, nasty snow everywhere. Our weekend was very pleasant. On Saturday, we braved the snow storm just to get out for a while. We took the girls to a small toy store that is nearby. Morgan picked out great toy that kept her entertained for most of the weekend. After our little adventure, we returned to the room and stayed until the evening when we went to another Christmas party. The kids are beginning to get used to seeing Santa everyday and I am not sure how they will react once we get back home to life as normal.
By Sunday, the sun was shining again and we made our way to Times Square to see Beauty and the Beast. Morgan loved it just as much this time as she did the first time. Morgan and Madison were both very well behaved. In fact, I think they were the best behaved children in the theater. After the play, we took them to Toys R Us so that they could ride the ferris wheel. Toys R Us was packed and it made me thankful that we had already done our toy shopping the day before at a smaller and much less crowded store. After the ride, we returned to the RM House where we went to yet another Christmas party. We are probably going to have to buy an extra suitcase just to get back all of the presents that the girls are getting.
Today's treatment was pretty typical for a Monday. The good news was that Morgan's white count was high enough that she did not have to get her GMCSF shot. The bad news is that Monday's are always a little more painful because her body seems to forget about it over the breaks. Therefore, she required two doses of dilaudid today and it really affected her in a bad way. She was very angry and pretty much out of control. She never officially napped, but all of a sudden she just snapped out of her bad mood. She is in the room now watching a video and seems to be okay. I am hoping and praying that she will not require as much narcotic the next four days.
Tomorrow will be a bit different for us. Morgan is having bone marrow aspirations done around 10:30. This means that she will not start getting treatment until noon. It should be an interesting day. Tomorrow will be hard because the drugs that she gets for sedation do a number on her. Then, when she wakes up it will be time to start treatment. They have already told us that Morgan will be in a different bed. She is very much a creature of habit so this could be a really bad way to start treatment. Please say a few extra prayers for us tomorrow.
Prayer Requests:
1) Pray for the Lord to protect us until we are home again.
2) Pray for the Lord to bless Holden during the time he has to be away from his mommy and sissy.
3) Pray for all of Morgan's tests and scans to show no evidence of disease. She is having bone marrows drawn tomorrow and then scans next week when we are home. Ask the Lord to never again allow this horrible disease to return to her body.
4) Remember to ask for complete healing for all of Morgan's friends who are fighting similar battles. Click here Neuroblastoma Warriors to learn about some very heroic children.
Thanks so much for continuing to keep Morgan and our family in your prayers. Prayers have certainly carried us over the last year and we do not know where we would be without them. I will update again tomorrow.
God Bless,
Allison
Friday, December 5, 2003
Hello Friends,
New York City is a Winter Wonderland at this moment. The snow has been falling since about 10:30 this morning and there is already a TON of it on the ground. We walked back from the hospital this morning and I was amazed at how peaceful it made the city seem. We even took Morgan and Madison out on the terrace to play in the snow and they really like it, although Morgan was not up for staying outside too long. I have heard that they are expecting around 18 inches by the time it stops falling. That is okay with me as long as it is all melted by the time our flight is supposed to take off next Friday evening.
Morgan has completed her first week of treatment. Today was another uneventful day. One dose of dilaudid controlled her pain and she was even really calm when we left clinic. We came back to the room and she slept for about an hour. Then she woke up, played and fell back to sleep again. Right now she is resting and I am hoping that she is in a terrific mood when she wakes up. She still has not picked up on the eating so I have started giving her Pediasure with a syringe. She is used to being fed this way. She has not really lost a significant amount of weight since we arrived in New York, but I am thinking that if she eats then she will have more energy and will just feel better. Every night this week she has complained of pain in her feet but we have been able to take care of it with Tylenol. This is a very common side effect of 3F8.
We had a terrific time last night. They had another Christmas party. The party started with the kids being able to make their own stuffed animals. Morgan made an adorable zebra which she named Zek. Madison made an elephant. And my favorite was Taylor's creation. Taylor is our buddy from Alabama and also our roommate this week. Taylor's mommy and daddy both went to Auburn and Taylor made an elephant which he named Bear. For those of you who know about the Auburn/Alabama rivalry, this is really funny! They served us a terrific meal; Morgan did not partake. Instead she found a little girl close to her age and they hit the dance floor. She had a ball and is so happy to be walking again. It turns out that her dance partner is from Asheboro, NC so she and Morgan are practically neighbors. After dinner, Morgan sent me to the grocery store to get her a lunchable. By the way, there was plenty of milk and bread to be found in the store even though a massive snowfall was headed into town. Morgan only nibbled on the ham and crackers, but it was better than nothing.
I don't think we will do much tonight since the snow is still falling pretty hard. I am hoping that tomorrow we will get a chance to take in the town. On Sunday, we have tickets to go see Beauty and the Beast. Morgan and I have already seen it, but Madison and Heather have not. Morgan simply loved it the first time we saw it and is very excited to experience it again.
Prayer Requests:
1) Ask for the Lord to bring us all home safely next Friday.
2) Pray that Holden is content during my time away from him.
3) Please pray that all of Morgan's tests will show no evidence of disease. She is having a bone marrow test done here on Tuesday. Ask the Lord to protect her body and to never again allow this hideous disease to return to it.
4) Remember to ask for complete healing for all of Morgan's friends who are fighting similar battles. Click here Neuroblastoma Warriors to learn about some very heroic children.
I will do another update after Morgan's treatment on Monday. I am hoping for a much more uneventful weekend than we had during our last round of 3F8 (that was when Morgan fell and broke her leg). Thanks for your continued love, support and prayers.
God Bless,
Allison
Thursday, December 4, 2003
Hello Friends,
We truly enjoyed our visit with Grandma and company last night. They arrived early in the evening and agreed to sit with the girls so Heather and I could catch a break for a second. We are basically spending 24/7 with our lovely daughters. We love them more than we could describe, but stepping out for a few minutes was very helpful last night. We went shopping and got some really good buys! Then, the gang bought dinner for us and we spend the rest of the evening talking, laughing and having a great time. Thanks so much to Grandma, Aunt Marty, Renae, and Creola (Crayon to Morgan). We really enjoyed our evening. We tried to talk them into staying for the remainder of our trip but we decided that eight people would be a little much for our small room and two twin beds.
Grandma's Gang is heading home today, just in time to avoid the big snow fall that is on the horizon for the northeast. We have heard that some winter weather is falling in NC, but they are calling for half a foot up here. That should be interesting! At least up here no one takes off to the store to buy bread and milk when they are calling for snow. For those of you who do not live in the South, you have no clue what I am talking about. But, for those of us born and bred below the Mason Dixon, we know that when winter precipitation is in the forecast, one must get to the store immediately to buy supplies (whether you need them or not) because you may not be able to get out of your house for a day or two. Man, I miss home and am so ready to get back home and enjoy a huge glass of sweet tea!
Anyway, the Little Princess had a very routine day at clinic today. Nothing out of the ordinary happened. The pain was controlled with two doses of dilaudid and she was as mean as ever as we got ready to leave clinic. However, she fell asleep soon after we arrived back at the RM House and so did Madison. Heather and I just sat in the room and enjoyed the silence for a while.
Prayer Requests:
1) Ask for the Lord's protection over us as we travel.
2) Pray for Holden to have a sense of peace about him until his sissy and I return home.
3) Ask for the Lord to bless Morgan's upcoming scans and tests. Ask Him to reveal that her body is totally healed of this disease.
4) Remember to ask for complete healing for all of Morgan's friends who are fighting similar battles. Click here Neuroblastoma Warriors to learn about some very heroic children.
Thanks so much for continuing to check on Morgan's progress and to keep her in your prayers.
God Bless,
Allison
Wednesday, December 3, 2003
Hello Friends,
Today was much better for all of us. It was a relatively short day and Morgan only required one dose of pain medication. She still got a little loud and crazy, but it lasted for a much shorter amount of time. Today's treatment was fairly routine. The only thing out of the ordinary that happened today is that a new nurse practioner nearly gave me a heart attack. She came in to check Morgan out and after listening to her heartbeat, the NP removed the stethoscope and commented, "she has a heart murmur, right?" Well, if she does this is the first that I have heard of it. My mind immediately starts trying to recall the last time Morgan had heart function studies performed. Then, I begin to worry that we are beginning to see the negative side effects of such high doses of chemotherapy. I told that nurse that she did not have a murmur three months ago at her six month post transplant studies. The NP said that she would send the doctor in to listen. Fortunately, Dr. Modak showed up rather quickly to listen to Morgan's heart. He said that what he heard sounded like the sound that some children get when they are receiving fluids. Morgan was hooked up to an IV at the time since treatment had already started. He eased my fears when he said that murmurs do not typically result from the types of chemo she had. They can cause heart damage, just not heart murmurs. Well, after all of this I needed someone to listen to my heart to make sure it was okay. But, I think that all of our hearts are beating just fine at present!
Last night, we ordered supper in and did not leave the room. The weather outside is frightful. Actually, it is just cold but it was much nicer to stay inside last night. All four of us were sound asleep by 9:30. We are doing a good job making up for that sleep we missed on Saturday. Tonight is a big night for Morgan. Grandma Vicky is in town and should be paying us a visit. Grandma and her friends make a yearly pilgrimage to NY the first week of December. Since we are all here at the same time, we are going to enjoy the company of Grandma and her buddies. I am just hoping that Morgan will allow her grandma to leave. There have been times when I have had to drag her kicking and screaming away from Grandma's house.
Prayer Requests:
1) Pray that the Lord will continue to bless us while we are away from home.
2) Pray for the Lord's protection over Holden and to give him joy during our time apart.
3) Pray for Morgan's upcoming tests to reveal no evidence of disease and ask for the Lord to protect her body and never again allow this horrible disease to return to her.
4) Remember to ask for complete healing for all of Morgan's friends who are fighting similar battles. Click here Neuroblastoma Warriors to learn about some very heroic children.
I will update with further news tomorrow. I know some of you out there had to be praying that today would be better for us. It was, and I thank you all so much for this and all of the other prayers that are being lifted to the Lord on Morgan's behalf.
God Bless,
Allison
Tuesday, December 2, 2003
Hello Friends,
What a LONG day it was! Morgan's treatment was somewhat easier than yesterday. She only required two doses of dilaudid and yesterday she needed three. Her heart rate dropped down to normal much quicker today too! However, we had an appointment with Dr. Morris today and that lengthened our day. Dr. Morris is the orthopedic surgeon who operated on Morgan after she broke her leg. The hardest part was the time between visits. Morgan was in a drug induced bad mood and let everyone she encountered know about it.
Our visit with Dr. Morris went very well. Morgan had another x-ray of her leg and it showed that the bone has healed. Morgan can now walk, although my child assures me that her leg is still broken and she cannot walk. Is anyone trying to place this for all it's worth or what?
Morgan decided last night that she does not love me anymore, at least that is what she tells me. I think she loves me most of the time, but when she is under the influence of drugs she is not aware of anything other than how bad she feels. She has told me frequently in the last 24 hours that she loves Heather now and not me. I am thrilled to have Heather's help, but I think Heather is a bit overwhelmed. Everytime Morgan starts crying for Heather so does Madison. Poor Heather is having a tough time meeting the needs of both girls. But, today was our longest day and I am hoping that things will get easier from here. I am deeply grateful to Heather for coming along with me to help out with Morgan.
We attended the Christmas party last night, but Morgan was really too tired to enjoy it. After we ate (we being everyone in our party except Morgan who has not eaten anything really substantial since our arrival in NY) Morgan and Madison received Christmas presents and then we returned to our room. It was at the party that Morgan announced (very loudly) that she does not love me anymore. Merry Christmas to me! I must admit my feelings were hurt but I have since gotten over it. Oh well, I will probably hear these words a million more times before Morgan is old enough to live on her own. At least that is my prayer!
I am in a bit of a state of shock right now. I just checked in with our buddy Carl and found out that he has relapsed. Carl was diagnosed with neuroblastoma eighteen days after Morgan. His family is from Minnesota and they are the nicest people. Please say an extra prayer for Carl. To offer his family some words of encouragement go to Carl's Page.
Prayer Requests:
1) Continue to pray for the Lord to protect us all while we are in NY.
2) Pray that Holden will be fine and happy during my time away from him.
3) Pray for the Lord to bless Morgan's scans and tests that are in the very near future. Ask that He never again permit this horrible disease to return to her body and all of the tests show that she still has no evidence of disease.
4) Remember to ask for complete healing for all of Morgan's friends who are fighting similar battles. Click here Neuroblastoma Warriors to learn about some very heroic children.
We do not have any plans tonight. It is very very cold here right now so I am not sure we will get out to do much. It was actually snowing here this morning, but just a few flurries. I will do another update after Morgan has her treatment tomorrow. Thanks so much for your faithful prayers for Morgan.
God Bless,
Allison
Monday, December 1, 2003
Hello Friends,
I cannot believe that it is already the first of December. This year has really flown by in record time. I must say that it has been a year in which we have truly been blessed by the Lord. He brought Morgan safely through transplant, He led us to NY so that Morgan can receive this treatment, and He brought us many new friends. We have met many wonderful people throughout the course of this journey. Some we have had the pleasure of meeting and others are people we communicate with via email and the internet. As you know, we feel that we have been carried by your prayers since Morgan was diagnosed with cancer and we thank you all for each and every prayer that you have said on our behalf.
We safely arrived in New York on Saturday. I must say that we really had a nice weekend. We were completely exhausted on Saturday, but we still managed to go to Central Park and ride the carousel. Morgan and Madison made it just in time to catch the last ride of the evening. Then, we had a nice dinner and came back to the RM House to crash. On Sunday, we slept late. We took the girls to the pottery shop and they each painted two works of art. Sunday night, we went to see the movie, Brother Bear. I was kind of shocked by how expensive it is to see a movie in NY, but our girls are worth it so Heather and I did not mind spending a little bit of money.
Morgan and Madison are having a fine time in the Big Apple. I think it has been good for Morgan to have someone here her own age to communicate with. Madison was a little angel today at clinic and did not complain once about being bored. I took some really cute pictures of the two of them sitting in Morgan's bed watching TV before the treatment got rough.
Today is Monday so it was a long day at clinic. We saw Dr. Kushner and he seemed pleased that we had no concerns to share with him. Morgan's immunue system tests revealed that her immunue system has returned to normal and she can stop taking Bactrim immediately. This is a preventative antibiotic that she has taken ever since she was diagnosed. She can stop her anti-viral med, acyclovir, after we get home. Wow! Morgan finished her last cycle of accutane and now she is coming off of her other meds too. This means that she will only be taking vitamins each day and is totally off of regular prescription medications. Dr. Kushner also discussed the possibility of removing her port after this round of antibodies. This is dependent upon her upcoming tests and scans showing no evidence of disease. I must admit that the prospect of not having that port does not excite me. It is so much easier to access her using it than it would be to try to find a vein. But, since Dr. Kushner knows more about the situation than I do, I will leave the decision up to him.
Today's treatment was very typical. Her pain was pretty intense. The only thing that was a bit different was that it took longer for her heart rate to come down following treatment. This suited Morgan just fine because it meant that she got to stay in her bed for a little bit longer. When it was finally time to leave, Morgan voiced her displeasure. She is still able to make many people on the streets of NY notice her as she is being pushed back to the RM House. Both girls are now in the room napping.
Prayer Requests:
1) Ask for the Lord to continue to keep us safe as we are away from home.
2) Pray that the Lord will bless Holden with contentment during our time away from each other.
3) Ask for the Lord's blessings over Morgan's treatment and ask Him to never permit this horrible disease to return to Morgan's body.
4) Pray that all of her upcoming scans and tests will reveal no evidence of disease.
5) Remember to ask for complete healing for all of Morgan's friends who are fighting similar battles. Click here Neuroblastoma Warriors to learn about some very heroic children.
December is a very festive time at the Ronald McDonald House. Today we are going to the first of many Christmas parties.
As always, thanks for checking in with us and for continuing to lift Morgan and the rest of our family in your prayers. I will do another update after Morgan's treatment tomorrow.
God Bless,
Allison
Wednesday, November 26, 2003
Hello Friends,
Well here I sit the night before Thanksgiving. We have so much to be thankful for. The Lord has touched our family in so many ways since Morgan was diagnosed with cancer. Right now, she is feeling great and seems to be very happy. Holden is growing like a weed and is always full of life and energy. Our friends and family are faithfully lifting us up in prayer.
This time last year, I remember writing about all of the things that we were thankful for. Morgan had just come out of a successful surgery and was making very good progress. I am even more thankful today than I was one year ago. I am always aware that things could take a dramatic turn for us at any moment. But, I am also always aware that the Lord will be there to carry us through anything that comes our way. I do not know how we would have made it through this without His love and your prayers.
Morgan will take her final accutane pill on Friday. If we weren’t flying out to NY on Saturday, I think I would throw a party. Her skin is pretty dry right now, but so far that is really the only side effect we have had with this cycle. Well, she has been a little emotional but I am not sure if that is accutane or just Morgan. She started her GMCSF shots this morning to prepare her for 3F8 treatment on Monday morning. She handled her shot just fine this morning, but I think it came as a total surprise to her that she had to get it.
Since my last update, we have been trying our hardest to just be normal. I am trying to get lose ends tied up before we depart on Saturday and trying to soak up as much Holden as I can before we have to be separated for two weeks. The story aired on Fox8 on Sunday night. It was good to see something regarding prayer in the news. For those of you who missed it, we have added a link to it on this page. Click HERE to see it. Wait a few seconds for it to load and then push the black triangle. It is a little small, but if we try to make it bigger it messes up the quality of the picture.
The highlight of our week was definitely tonight. We went to the Thanksgiving Love Feast at Hopewell Moravian Church. We were honored to learn that the youth of the church had sponsored our family in a fundraising effort. We were presented with a check to help cover the expenses of Morgan’s medical treatment in New York, which is not covered by insurance. To our friends at Hopewell, we love you and we truly appreciate all you have done for us since this saga began for us. There are no words to express the feelings of gratitude that we have for your church and for each of you. When Jerry and I were trying to decide whether or not to pursue the antibody treatment, we knew that it was not covered by insurance. However, we made a decision to take a step of faith. If we could depend on the Lord to heal our child, we could most certainly depend on Him to take care of us financially.
Tomorrow we are spending Thanksgiving with Grandma Penny and family. We are really just planning on spending time together as a family until Morgan and I depart for New York. We will be heading out very early on Saturday morning.
Prayer Requests:
1) Ask the Lord to protect us as we travel to New York and to bless all aspects of our journey.
2) Pray that Morgan’s scans in December will reveal no evidence of disease.
3) Pray for Holden. Ask the Lord to give him a spirit of contentment during the time that I am in New York.
4) Remember to ask for complete healing for all of Morgan's friends who are fighting similar battles. Click here Neuroblastoma Warriors to learn about some very heroic children.
I will do another update after Morgan completes treatment on Monday. I hope you all have a wonderful Thanksgiving. Thanks so much for continuing to pray for our family.
God Bless,
Allison
Thursday, November 20, 2003
I have added a link so that you can see the story on Fox8 news. Click HERE to see it. Wait a few seconds for it to load and then push the black triangle. It is a little small, but if we try to make it bigger it messes up the quality of the picture.
I added some new pictures so check out the photo album!
Hello Friends,
Our day at the hospital was pretty short today considering that we had two appointments. We started out with a routine clinic visit. Morgan's counts are fine. I did not even wait around for the results of her chemistries to come back. While she is on accutane, they have to keep a close watch on her calcium levels. They said they would call if anything was off. I am not really expecting a call since this is her sixth (and last) round of accutane and she has not had any problems in the past.
The nurse practioner who examined Morgan said that she looks great. We got a prescription for antibiotics. When we come back from NY, Morgan has a dentist appoinment scheduled and as long as she has her port, she needs to take antibiotics before any dental work is performed. Other than that, it was a very routine (and quick) visit.
I have been trying to get in touch with the team at Duke for two weeks to schedule Morgan's nine month scans. Which, by the way, Morgan is nine months post-transplant today. I cannot believe how quickly the last nine months have gone by. Anyway, I was having no luck getting things scheduled with Duke and I mentioned this to the nurse practioner at Wake. She had fabulous news for me! Wake and Duke used to use different isotopes for the MIBG scan. Sloan Kettering preferred the isotope that was used by Duke so we either had to have these scans performed at Duke or in NY. But, recently Wake has started using the same isotope. This means we can do all of her scans here. Praise the Lord! This certainly helps to simplify our lives. So, in a matter of minutes we got Morgan's scans scheduled. She will have an MIBG and a CT scan on December 18. Of course, when I got home I checked my email and there was a message from Duke saying that they had her scans scheduled. OOPS! I apologized if I caused any inconvenience and let them know that we prefer to do the scans here.
After the clinic visit, I took Morgan to physical therapy. She now has the walker mastered well enough that she has been given the clearance to use it at school. She is very good at it. However, I have noticed that when Morgan doesn't think that anyone is watching she will put weight on her right leg. The physical therapist said that she would probably be okay doing this but to discourage it until we received word from the doctor that it is okay to put weight on the right leg again.
Holden is better now. Thanks so much for the prayers. It makes us so nervous when he has even a simple illness, because we are scared that it will turn out to be something horrible.
I really hope that the intended meaning of this journal is coming across to all who read it. It is my desire that everyone who reads this journal gets a glimpse into how much our Lord has done for us. This is a time of year when most people closely examine all of the things that they have to be thankful for. This family could write a book about all of the things that we praise the Lord for on a daily basis. We give God all the Glory and praise Him everyday. We have learned so much about the power of prayer and what a wonderful gift it is that we have a Lord who truly desires a close personal relationship with His people. A wonderful way to maintain this relationship is to go to the Lord everyday in prayer. Converse with Him, just as you would with an old friend.
Speaking of prayer, our story will air on Fox8 news Sunday night at 10:00. Neill McNeill is doing a story on the power of prayer and healing. He focuses on Morgan's story as well as on our friend KHALITA I believe this story will be a powerful tool to bring many to Christ. Please pray that it will have that effect too!
We ask the Lord everyday to continue to shower blessings on our family. These are prayer requests for today:
1) Pray that the Lord will provide us with safety during our next trip to New York.
2) Pray that Morgan's scans in December will show no evidence of disease.
3) Ask the Lord to never again permit cancer to return to Morgan's body.
4) Pray that the Lord will use the story on prayer to bring many people to Him.
5) Remember to ask for complete healing for all of Morgan's friends who are fighting similar battles. Click here Neuroblastoma Warriors to learn about some very heroic children.
We have nothing medical planned until December 1 when Morgan begins her sixth round of 3F8. We hope that your family has a wonderful Thanksgiving. Thanks so much for checking on Morgan and her lifting her to the Lord in prayer.
God Bless,
Allison
Thursday, November 13, 2003
Hello Friends,
Happy Birthday Grandma Penny!
This is just a quick update. Morgan had her third hearing test today. She is still doing well in that department. She actually showed improvement in her right ear. This is not surprising considering that she had an ear infection when she was last assessed. Her left ear was a little worse, but only very slightly. In fact, it may have been caused by the equipment rather than a true hearing loss. She is scheduled to be tested again in February.
Holden's tummy seems to be getting a little better. I have to take him to the doctor on Tuesday to get the second dose of his flu shot. If he is still showing strange symptoms, I will speak to the doctor then. Thanks for praying for him and please continue.
Morgan will start her last round of accutane this weekend. That drug is normally pretty harsh, especially on her skin. We are very thankful that this is the last time she will have to take this medicine. One week from today, Morgan will go to clinic and have another visit with the physical therapist. I will do another update at that time.
November 11, 2003
Hello Friends and Happy Veteran's Day!
Morgan continues to do well and we are staying busy. This weekend, we put up our Christmas Tree. Normally, we do this after Thanksgiving. However, since Morgan and I will be in New York for two weeks during December, we wanted to get the full enjoyment out of all the Christmas decorations. I did not even feel like putting up a tree last year, so we put up a very small one. I think both of the kids are enjoying the big Christmas tree.
I had a rude awakening when I called to make our airline reservations. We were originally scheduled to fly out on Sunday, November 30. I did not even think about the fact that this is the Sunday after Thanksgiving and the most heavily traveled day of the year. There were absolutely no flights available on the 30th. And, the only one we could get on the 29th was at 6:07 in the morning. So, it looks like we will be getting a pretty early start to NY and will be spending an extra day there. I am so thankful that Heather took this announcement in stride. She is such a dear friend for accompanying Morgan and me on this trip to the Big Apple.
We had the funniest thing happen to us this weekend. A few weeks ago we received an invitation in the mail addressed to Morgan Barnes, Lewisville NC 27023. There was no street name on the envelope. The party was for McKenzie. Morgan has a child named McKenzie in her class and since Morgan missed an entire year of being able to attend birthday parties, we decided to go. We had been at the party for about 30 minutes and someone asked me how we knew McKenzie. I replied that Morgan and McKenzie were classmates. Then, this conversation led to a comment about what a good teacher Miss Ann is. And I said, "Morgan's teacher is not Miss Ann". Well, as it turns out we have NO IDEA who these people are. Apparently, there is another Morgan Barnes who lives in Lewisville. This child is in McKenzie's class and was the intended recipient of this invitation. But, being that it is a very small world, we discovered that McKenzie's father and my brother used to be friends when they were young. He actually remembered me and the rest of my family. They were the nicest people and they begged us not to leave once we determined that we were not the right Barnes family. So, we crashed a small child's birthday party this weekend.
Morgan had physical therapy today and she really did well. She is now able to use her walker, but she is still restricted from putting any weight at all on that right leg. She really gets a workout from using the walker and she is thoroughly exhausted as I am typing this update. She is only to use the walker for short periods of time right now. Therefore, she will still need to be in the wheelchair quite a bit. Hopefully, she will gain more mobility soon.
Prayer Requests:
1) Pray that Morgan's leg continues to heal and she is able to walk soon.
2) Ask for the Lord to protect our travels as we return to NY.
3) Pray that the Lord will never again permit cancer to return to Morgan's body.
4) Remember to pray for all of Morgan's friends who are facing similar struggles.
5) Please pray for Holden. He is having some stomach issues that we have been dealing with for over a week. I think I am going to be taking him to the doctor in the next few days to see if we can get to the bottom of this. I am always terrified when he gets sick and fear the worst. Please pray that this is something simple.
6) Pray that Neil McNeil's story on Fox8 will reach all of those who need to hear it. (It will be on TV the Sunday before Thanksgiving at 10:00 pm).
God Bless,
Allison
Tuesday, November 11, 2003
Hello Friends and Happy Veteran's Day!
Morgan continues to do well and we are staying busy. This weekend, we put up our Christmas Tree. Normally, we do this after Thanksgiving. However, since Morgan and I will be in New York for two weeks during December, we wanted to get the full enjoyment out of all the Christmas decorations. I did not even feel like putting up a tree last year, so we put up a very small one. I think both of the kids are enjoying the big Christmas tree.
I had a rude awakening when I called to make our airline reservations. We were originally scheduled to fly out on Sunday, November 30. I did not even think about the fact that this is the Sunday after Thanksgiving and the most heavily traveled day of the year. There were absolutely no flights available on the 30th. And, the only one we could get on the 29th was at 6:07 in the morning. So, it looks like we will be getting a pretty early start to NY and will be spending an extra day there. I am so thankful that Heather took this announcement in stride. She is such a dear friend for accompanying Morgan and me on this trip to the Big Apple.
We had the funniest thing happen to us this weekend. A few weeks ago we received an invitation in the mail addressed to Morgan Barnes, Lewisville NC 27023. There was no street name on the envelope. The party was for McKenzie. Morgan has a child named McKenzie in her class and since Morgan missed an entire year of being able to attend birthday parties, we decided to go. We had been at the party for about 30 minutes and someone asked me how we knew McKenzie. I replied that Morgan and McKenzie were classmates. Then, this conversation led to a comment about what a good teacher Miss Ann is. And I said, "Morgan's teacher is not Miss Ann". Well, as it turns out we have NO IDEA who these people are. Apparently, there is another Morgan Barnes who lives in Lewisville. This child is in McKenzie's class and was the intended recipient of this invitation. But, being that it is a very small world, we discovered that McKenzie's father and my brother used to be friends when they were young. He actually remembered me and the rest of my family. They were the nicest people and they begged us not to leave once we determined that we were not the right Barnes family. So, we crashed a small child's birthday party this weekend.
Morgan had physical therapy today and she really did well. She is now able to use her walker, but she is still restricted from putting any weight at all on that right leg. She really gets a workout from using the walker and she is thoroughly exhausted as I am typing this update. She is only to use the walker for short periods of time right now. Therefore, she will still need to be in the wheelchair quite a bit. Hopefully, she will gain more mobility soon.
Prayer Requests:
1) Pray that Morgan's leg continues to heal and she is able to walk soon.
2) Ask for the Lord to protect our travels as we return to NY.
3) Pray that the Lord will never again permit cancer to return to Morgan's body.
4) Remember to pray for all of Morgan's friends who are facing similar struggles.
5) Please pray for Holden. He is having some stomach issues that we have been dealing with for over a week. I think I am going to be taking him to the doctor in the next few days to see if we can get to the bottom of this. I am always terrified when he gets sick and fear the worst. Please pray that this is something simple.
6) Pray that Neil McNeil's story on Fox8 will reach all of those who need to hear it. (It will be on TV the Sunday before Thanksgiving at 10:00 pm).
Morgan has another hearing test on Thursday. I will try to do another update then. Our internet service is currently down (I am typing this at Grandma's house and my kids are downstairs going crazy). Thanks for continuting to lift Morgan and the rest of our family in prayer.
God Bless,
Allison
Tuesday, November 4, 2003
Hello Friends,
I just wanted to let you know that I have heard from Dr. Kushner in New York and Morgan is HAMA negative. This means that we will be traveling to NY on 11/30 to begin treatment on 12/1. This time, we are traveling with Morgan's buddy, Madison, and her mommy, Miss Heather. Morgan enjoys the company of Madison and Heather. I am hoping that this will encourage her to snap out of her bad moods after treatment is over each day.
Morgan will go to her first physical therapy session on November 11. I will do another update after this appointment.
November 3, 2003
Hello Friends,
I hope that you all had a wonderful weekend. We surely did. On Friday, I took the kids to North Stokes High School, where I used to work. They were having a Celebration of Education. It was so wonderful to see all of my old co-workers and to thank them for helping me out so much in the months following Morgan's diagnosis. They were so good to me and I certainly can not say "thank you" enough.
Friday night we took the kids Trick or Treating with our friends, the McLeods, and they both had a great time. Holden is such a sweet child. At every house, he made sure to deliver candy to his "Sissy" before taking candy for himself since she was not able to go up on the porch due to the wheelchair. He has such a caring quality about him. He is truly a very special little boy. I think that having a sister with medical issues has given him a sympathetic side that very few children have. I just hope that he always keeps his caring attitude.
Morgan had another x-ray done today and then she saw Dr. Koman, the orthopedic surgeon. The x-ray room was one of the same rooms where Morgan had to go to have several feeding tubes placed right after she was diagnosed with cancer. Morgan has a great memory and she remembered the place as soon as we entered the waiting room. Morgan was not very happy or cooperative during the x-ray. But, once we got out of that room she was in a very good mood. The x-ray showed that her leg is healing very nicely. She is ready to start physical therapy. They are going to teach her to use a walker so that she can walk without putting weight on the broken femur.
Things are terrific here at the Barnes house. Morgan has finished the fifth round of accutane. This means that she should only have to take one more two week cycle of that stuff. Although some children take more than six cycles. Morgan has gone back on megace so her appetite is increasing too. We weighed her today and I was surprised that she has managed to maintain at around 33 pounds. Her appetite has been nonexistant since she broke her leg so this was a pleasant surprise. But, she has been pretty good about taking pediasure with a syringe. I guess this is helping her to keep the pounds on. Morgan acts like she feels terrific and she has been in a very good mood. We are so thankful to the Lord for blessing us with Morgan's good health.
Prayer Requests:
1) Pray that cancer will never again be permitted to invade Morgan's body so that she can live a long life in His service.
2) Pray for Morgan's leg to continue to heal.
3) Pray that our interview with Fox8 will be used to reach many who do not yet know the love of Jesus.
4) Remember to ask for healing for all of Morgan's buddies who are also fighting life threatening illnesses.
God Bless,
Allison
Monday, November 3, 2003
Hello Friends,
I hope that you all had a wonderful weekend. We surely did. On Friday, I took the kids to North Stokes High School, where I used to work. They were having a Celebration of Education. It was so wonderful to see all of my old co-workers and to thank them for helping me out so much in the months following Morgan's diagnosis. They were so good to me and I certainly can not say "thank you" enough.
Friday night we took the kids Trick or Treating with our friends, the McLeods, and they both had a great time. Holden is such a sweet child. At every house, he made sure to deliver candy to his "Sissy" before taking candy for himself since she was not able to go up on the porch due to the wheelchair. He has such a caring quality about him. He is truly a very special little boy. I think that having a sister with medical issues has given him a sympathetic side that very few children have. I just hope that he always keeps his caring attitude.
Morgan had another x-ray done today and then she saw Dr. Koman, the orthopedic surgeon. The x-ray room was one of the same rooms where Morgan had to go to have several feeding tubes placed right after she was diagnosed with cancer. Morgan has a great memory and she remembered the place as soon as we entered the waiting room. Morgan was not very happy or cooperative during the x-ray. But, once we got out of that room she was in a very good mood. The x-ray showed that her leg is healing very nicely. She is ready to start physical therapy. They are going to teach her to use a walker so that she can walk without putting weight on the broken femur.
Things are terrific here at the Barnes house. Morgan has finished the fifth round of accutane. This means that she should only have to take one more two week cycle of that stuff. Although some children take more than six cycles. Morgan has gone back on megace so her appetite is increasing too. We weighed her today and I was surprised that she has managed to maintain at around 33 pounds. Her appetite has been nonexistant since she broke her leg so this was a pleasant surprise. But, she has been pretty good about taking pediasure with a syringe. I guess this is helping her to keep the pounds on. Morgan acts like she feels terrific and she has been in a very good mood. We are so thankful to the Lord for blessing us with Morgan's good health.
Prayer Requests:
1) Pray that cancer will never again be permitted to invade Morgan's body so that she can live a long life in His service.
2) Pray for Morgan's leg to continue to heal.
3) Pray that our interview with Fox8 will be used to reach many who do not yet know the love of Jesus.
4) Remember to ask for healing for all of Morgan's buddies who are also fighting life threatening illnesses.
We should know by Wednesday if Morgan is HAMA positive or negative. If she is negative, then we will return to NY on December 1 for round 6 of antibodies. If she is positive, then we have completed that the antibodies treatment. We are asking that the Lord allow her to get HAMA at the best possible time for the cancer to never return to her body. I will do another update when we hear from the HAMA test.
God Bless,
Allison
Thursday, October 30, 2003
Hello Friends,
We have certainly enjoyed our time away from medical facilities. We have also been extremely busy! I am beginning to wonder how we ever managed to fit aggressive cancer treatment into our schedules!!!
Morgan is back in school for a full day! She loves it and the teachers say that she is doing well. They have seen a change in Morgan and she is now more talkative and open these days. This is an answer to prayer. In some ways the wheelchair has been a blessing to us. The children in Morgan's class are very curious about the chair and will approach her with questions and to talk to her. You may remember that a few journal entries ago I stated that Morgan just did not know how to get into a group and socialize. Well, now the kids are coming to her and this makes things somewhat easier for her.
On Saturday, we attended a birthday party for Smith, my nephew. Morgan had a nice time even though she was somewhat limited by the chair. I am sure she would have preferred to be on her feet playing with all the other children. Holden joined right in the crowd and had a great time too. The best part of the party was that the kids got to wear their Halloween costumes. Morgan was the most beautiful Little Mermaid in attendance and Holden was by far the cutest Tank Engine. By the way, she was the only mermaid there and he was the only tank engine but that is really unimportant, right?
On Monday, we were blessed by the Lord and our friends, Khalita and Michelle. KHALITA has a condition called aplastic anemia and she and Morgan share some of the same doctors. She has a ministry called HE CARES. Michelle is one of my oldest and dearest friends. We met when I was four and have been friends ever since. Khalita held a Southern Living Home party as a fundraiser for Morgan and Michelle hosted it. I thank everyone who attended this party. You are all a true blessing to us.
Neill McNeill of Fox8 is doing a story on the power of prayer in healing. Khalita is being featured in this broadcast and I was interviewed Monday night. I was able to give a wonderful testimony to the mighty healing power of Jesus. This is an exerpt from Khalita's website regarding this story:
" . . . the story is scheduled to air the Sunday before Thanksgiving on Fox 8. In the meantime, I want to ask all of you to first of all pray for Neill McNeill as he puts the story on prayer and healing together. As I mentioned before, I didn't contact him, he contacted me. The Lord put it on his heart to do this story and he chose this particular person (Neill McNeill) to do it. This person obeyed and it is OUR job to pray that the message of how Christ DOES heal spreads not only in our little area but around the world. I believe that the more we pray for Neill, for Fox8 and for the broadcast the more evident the hand of God will be in reaching those for whom this broadcast was intended. You may also send a message to fox8@wghp.com thanking them for being willing to air a story like this. Not all News stations and/or people would. This is clearly Christian and is worthy of our attention and prayers. I do ask that you don't email Neill because I don't want his mailbox to overflow with mail. An email to the station will be just fine. I'm sure they will get the messages to him."
Today I took Morgan to the clinic to have blood drawn for her HAMA test. This test will determine if she is eligible for another round of antibodies. We had to wait for over an hour just to be seen. I try not to get too impatient while waiting because there are always really sick kids at clinic who need to be seen by the doctor. We were just waiting for a room to open up. The nurses finally decided to draw the blood somewhere other than a room. Anyway, Morgan's blood will arrive in New York City tomorrow and we will know by Wednesday whether or not we are expected to be in New York on December 1. We are praying for the Lord's will to be done on this issue and for Morgan to be HAMA positive at the best possible time to keep this horrible disease from ever returning to her body.
Tonight I am taking the kids to have their Christmas pictures taken. This is something that we missed out on last year. I am hoping that the Accutane rash that Morgan has will not show up in the pictures. But, if it does so what? That rash says a lot about what a strong little girl she is and is a testimony to the work that the Lord has done in her body. There are many children who are diagnosed with neuroblastoma and never get to the point where they can take this drug because they never are considered to have "no evidence of disease".
Tomorrow the kids are going Trick or Treating with their buddy, Madison. Morgan was in the hospital receiving chemo on Halloween last year so she is really looking forward to tomorrow night. She has been referring to Madison as "Madison the Elephant" because that is what she is dressing up as. I hope this is not a nickname that sticks. I just can't see Madison being happy about being called an elephant when she is 16 and Morgan is 17.
The cookbooks are selling very quickly. If you would like more information, please email me at allisonbarnes@triad.rr.com
Prayer Requests:
1) Pray that Morgan's leg will heal quickly so she can return to her active lifestyle.
2) Pray that the Lord will protect Morgan and will never again permit this disease to invade her body.
3) Please remember Morgan's friends who are also fighting life threatening diseases.
Morgan has an appointment with Dr. Koman on Monday. I think he is going to do another x-ray to see how much healing has taken place in Morgan's bone. I will do another update on Monday after the appointment.
Thanks so much for your continued prayers for Morgan. There is definitely power in prayer!
God Bless,
Allison
Sunday, October 26, 2003
HI! WE JUST WANTED TO LET EVERYONE KNOW THAT THE COOKBOOKS HAVE ARRIVED. AGAIN WE WOULD LIKE TO THANK GRANDMA PENNY AND EVERYONE ELSE WHO HELPED OUT TO MAKE THIS BOOK HAPPEN.
IF YOU ARE INTERESTED IN PURCHASING A BOOK, EMAIL ME (ALLISONBARNES@TRIAD.RR.COM) AND I WILL SEND YOU THE INFO. THE PROCEEDS WILL BE USED TO HELP PAY FOR OUR EXPENSES INCURRED AT MSKCC, WHICH ARE NOT COVERED BY INSURANCE.
THANKS!
Thursday October 23, 2003
Hello Friends,
Today was a very busy day. It started off with me sleeping too late. I intended to get up at 6:00, but did not mangage to roll out of bed until 7:00. This put us in a real rush since Morgan had speech class at 7:40. But, we managed to get her there on time and I guess that is all that matters.
After speech, Morgan had a routine checkup at clinic. All of her counts were great! Everyone was a bit shocked to see Morgan come riding in in a wheelchair. I assumed that MSKCC sent Morgan's doctors here an update about the broken leg. They did not, and everyone was very surprised about our ordeal. The checkup went well and Dr. McLean was very pleased with how well Morgan is doing!
The second appointment on our agenda today was to have the stitches removed from Morgan's leg. She was not looking forward to this at all. Dr. Koman recommended that we give her some Versed to help her relax about thirty minutes prior to the removal. This made her drunk. I am not sure if she was anymore relaxed, but I am pretty confident that Morgan does not remember much about those stitches coming out. However, Morgan is a very predicatable kid. Since she was in a drug induced stupor, she did not want to leave the room where the stitches were removed. And yes, she can scream just as loud in Winston Salem as she can in New York City. I pushed her wheeelchair out into the waiting room as she screamed. She was still screaming as I was putting her into the van. I always expect someone to call security in situations like that because it must appear to an outsider that I am abducting a child or something. She was calm by the time we arrived home and we had a peaceful afternoon. She passed out and took a nap after the drugs wore off.
We are very pleased with the progress that Morgan has made. We believe this is due to the prayers that are being prayed for her each and everyday. We have witnessed the Lord perform a miracle in Morgan's body and we are so thankful for every day that we have where she is feeling well. We have no idea what the future holds for us, but we know that our Lord will be there holding our hands every step of the way.
Prayer Requests:
1) Pray for Morgan's leg to heal quickly so that she can resume her active lifestyle.
2) Ask that the Lord never allow cancer to return to Morgan's body.
3) Please ask for complete healing on behalf of all Morgan's friends who are fighting this terrible disease.
We actually get an entire week with no medical appointments. Next Thursday, Morgan goes back to clinic to have her HAMA blood drawn. I will do another update after that. Thanks for checking in with us and please continue to pray for Morgan.
God Bless,
Allison
Thursday, October 23, 2003
Hello Friends,
Today was a very busy day. It started off with me sleeping too late. I intended to get up at 6:00, but did not mangage to roll out of bed until 7:00. This put us in a real rush since Morgan had speech class at 7:40. But, we managed to get her there on time and I guess that is all that matters.
After speech, Morgan had a routine checkup at clinic. All of her counts were great! Everyone was a bit shocked to see Morgan come riding in in a wheelchair. I assumed that MSKCC sent Morgan's doctors here an update about the broken leg. They did not, and everyone was very surprised about our ordeal. The checkup went well and Dr. McLean was very pleased with how well Morgan is doing!
The second appointment on our agenda today was to have the stitches removed from Morgan's leg. She was not looking forward to this at all. Dr. Koman recommended that we give her some Versed to help her relax about thirty minutes prior to the removal. This made her drunk. I am not sure if she was anymore relaxed, but I am pretty confident that Morgan does not remember much about those stitches coming out. However, Morgan is a very predicatable kid. Since she was in a drug induced stupor, she did not want to leave the room where the stitches were removed. And yes, she can scream just as loud in Winston Salem as she can in New York City. I pushed her wheeelchair out into the waiting room as she screamed. She was still screaming as I was putting her into the van. I always expect someone to call security in situations like that because it must appear to an outsider that I am abducting a child or something. She was calm by the time we arrived home and we had a peaceful afternoon. She passed out and took a nap after the drugs wore off.
We are very pleased with the progress that Morgan has made. We believe this is due to the prayers that are being prayed for her each and everyday. We have witnessed the Lord perform a miracle in Morgan's body and we are so thankful for every day that we have where she is feeling well. We have no idea what the future holds for us, but we know that our Lord will be there holding our hands every step of the way.
Prayer Requests:
1) Pray for Morgan's leg to heal quickly so that she can resume her active lifestyle.
2) Ask that the Lord never allow cancer to return to Morgan's body.
3) Please ask for complete healing on behalf of all Morgan's friends who are fighting this terrible disease.
We actually get an entire week with no medical appointments. Next Thursday, Morgan goes back to clinic to have her HAMA blood drawn. I will do another update after that. Thanks for checking in with us and please continue to pray for Morgan.
God Bless,
Allison
Monday, October 20, 2003
Hello Friends,
Words cannot express how happy we are to be at home together as a family. Despite a broken leg -- this family has truly been blessed by God. His love for us is so amazing and I am continually reminded that He is always there to support us and carry us through every difficult situation. We praise His name! God is good -- ALL THE TIME!
Morgan went to see Dr. Koman today. He is the orthopedic surgeon that Morgan will see here (and also one of the doctors Jerry works for). He determined that Morgan does not need to wear the brace at all. This was wonderful news because Morgan saw us take it out of the van and immediately started crying and saying that she did not want to wear the brace. Dr. Koman suggested that we rent her a wheel chair. This is what we did and so far it is working out great! She has the mobility to get around without putting any weight on her bad leg. Morgan will have x-rays done in two weeks to determine if the leg has healed enough for her to come out of the wheelchair and progress up to the walker. The best news is that Morgan will be able to return to school. I called her teacher, Mrs. Canipe, tonight and we discussed Morgan's return to school. Mrs. Canipe said that they would be willing to help us out in any way possible. We decided that Morgan will go on Wednesday and Friday of this week for two hours. We will see how this goes and then decide if she is ready to return for the entire four hours next week. Morgan is so happy about being able to return to school and Jerry and I are certainly thrilled for her.
I spoke with Dr. Morris, the orthopedic surgeon from New York, today. She let me know that the final pathology results came back showing absolutely no tumor whatsoever on Morgan's bone. Praise be to God! This is another reason to rejoice. I remember several weeks ago when I stated that we had been overjoyed by the fact that Morgan had "just an ear infection" and now we are thrilled by the fact that she "just has a broken leg". Neuroblastoma certainly gives life an interesting perspective.
Prayer Requests:
1) Pray that Morgan's leg will heal quickly so she can resume her busy lifestyle.
2) Pray that the Lord will never again allow cancer to invade Morgan's body.
3) Pray for complete healing for Morgan's friends who are also fighting cancer.
Thursday will be a busy day for us. Morgan has a clinic visit in the morning and then she will go get her stitches removed in the afternoon. She is very excited about this because it means that she can take tub baths again. She hates sponge baths and hates washing her hair in the sink even more. I will do another update after our appointments on Thursday. Thanks so much for continuing to lift Morgan in prayer.
God Bless,
Allison
Saturday, October 18, 2003
Hello Friends,
Greetings from beautiful Lewisville, North Carolina! We arrived home close to 1:00 this morning, and are thrilled to be here. I am sorry that I did not do an update on Thursday or Friday, but I was honestly just too tired and frustrated to do it.
We are home and that is all that matters now, but it has been a very long week. On Thursday, the brace was brought into Morgan's room. They put it on her, she cried. She eventually took a few steps in it using her walker so they let her take the brace off. Then, the orthopaedic surgeon comes in to look at the brace and tells us that it is all wrong. Morgan is NOT to wear the brace that we have spent a week waiting for in the hospital. The surgeon tells us to bring it home and let the team here at Brenner take a look at it and they can either modify it or totally start over.
Therefore, we had to be very careful about Morgan's leg on our journey home. Once again, Grandma Vicky did an excellent job carrying Morgan and keeping that leg well guarded. Unfortunately, since Morgan does not have a brace, the only thing she is allowed to do it sit on the couch. If she puts any weight at all on that broken femur, it could fracture the bone again. She is actually being pretty mature about the whole thing and not insisting that she get up and go.
I wish so much that she were able to run and play now that she is home. I am dreading Tuesday night when she does not get to go to dance class, and Monday morning when we have to tell her that she can not go to school. Is Morgan ever going to get to enjoy all of the things that other kids get to do? I am truly thankful to the Lord for the healing that He has performed in Morgan's body. But, sometimes it is hard keep sight of that when time after time things just do not seem to go her way.
The last two days of Morgan's treatment were very "normal". She experienced a lot of pain. But, looking back at the last week, the inpatient treatments were actually somewhat easier because Morgan never had to go through the stress of leaving the clinic. Since Morgan is still having pain, she is almost certainly still HAMA negative. The official blood tests will be sent to NY on October 30. It looks as if we will be returning to New York on November 30 to begin treatment on December 1. We will stay until the 12th. This is not quite eight weeks, but this is a good thing. If we waited eight weeks, we would be in NY over Christmas. The team agreed to allow us to take a six week break so we can be home for the holidays.
Prayer Requests:
1) Pray that Morgan's leg will heal quickly so that she can return to the activities that she loved so much.
2) Pray that cancer will never again return to Morgan's body.
3) Remember to pray for all the other children who are fighting this disease.
Morgan has an appointment with the orthopaedic team here in Winston on Monday. I will do an update following this appointment. Thanks so much for you faithful prayers.
God Bless,
Allison
Wednesday, October 15, 2003
Hello Friends,
Morgan remains in the hospital. But, the only thing that is keeping her there is the fact that she does not have her brace yet. She was fitted for it yesterday and the man who measured her told us that we could expect it on Thursday or Friday morning at the latest. I assume that if she is not in it by Friday at noon, I will call the airline and reschedule our flight. As of right now, we are supposed to fly out at 6:30 pm. We are all so ready to get home and anxiously waiting the arrival of the brace.
Overall, Morgan seems to be doing fine. She was unhooked from her IV for most of the day yesterday and will be unhooked again today once the 3F8 is over. She really is not receiving any medications for pain other than a dose of Tylenol every now and then. I am going to try to get her to go for a ride in a wheelchair today just to get her out of the room. She was in an excellent mood today (before her antibody treatment). When I left the hospital, the treatment was almost over. She had some pain but not nearly as bad as Monday. She ate two pieces of bacon this morning, so her appetite seems to be picking up too.
Prayer Requests:
1) Pray for the Lord to never allow any more cancerous cells to grow in Morgan's body.
2) Pray that things will fall into place so that we can return home on Friday.
3) Pray for the Lord to be with Holden while I am separated from him.
4) Pray on behalf of Morgan's friends who are also fighting cancer.
Hopefully, I will be doing another update tomorrow to let everyone know that Morgan has her brace and has been discharged from the inpatient ward. Thanks so much for your faithful prayers on Morgan's behalf.
God Bless,
Allison
Tuesday, October 14, 2003
Hello Friends,
Morgan remains in the hospital. The brace makers did not come by yesterday. Jennifer, our primary nurse from clinic, came by to visit and she said that the brace shop was probably closed due to Columbus Day. Hopefully, she will be fitted for the brace today and will receive it tomorrow. We have been told that as soon as she has her brace and is comfortable in it, she can be discharged. So far, she has expressed no desire to get out of the bed. I do not think she is in that much pain, I just think she remembers how much that leg was hurting and therefore is afraid to use it.
She is also expressing no interest in eating. I have had to put her back on the Pediasure diet. For most of Morgan's chemotherapy, we kept her weight up by feeding her Pediasure with a syringe. I am hoping that getting something on her stomach, will encourage her to have an appetite. But, she is not expending much energy and therefore probably does not feel as hungry. I think this will improve once she gets her brace and figures out how to move around with it.
Morgan did receive her antibody treatment yesterday. And it will HIDEOUS. I think it is the most painful one she has ever had. The pain lasted for what seemed like hours. She had to have blow-by oxygen and this is the first time that has happened since her first treatment. Also, the treatment totally knocked the wind out of her sails yesterday. She was tired and irritated for the entire day. As I was leaving today to come back to the RM House to take my shower and do this update, I noticed they were coming in to start treatment. Hopefully, it will be much easier on her today than it was yesterday.
Prayer Requests:
1) Pray that the final tests will reveal that there is no evidence of neuroblastoma on that bone she broke.
2) Pray that we will be able to return to NC on Friday and the Lord will bless us with a safe trip.
3) Pray that Morgan's leg will heal quickly and she can once again return to school and dance class.
4) Continue to ask for the Lord's blessings on Holden while I am away from him.
5) Please remember to pray for all of Morgan's friends who are fighting for their lives.
Please come back tomorrow to see what is going on in Morgan's world. Thanks so much for your continued prayers, love, and support.
God Bless,
Allison
Monday, October 13, 2003
Hello Friends,
I fully expected today's update to tell you all what a wonderful weekend we had. However, as some of you already know (and thanks for signing the guestbook to wish Morgan get well wishes) our weekend was anything but wonderful.
About an hour after I did the update on Friday, Morgan was happily playing in the room. I think she was stacking her books up on the bed. Somehow, her left foot got tangled in the bedspread and when she took her next step, her left foot was jerked out from under her and she fell hard. The right leg took the full force of the fall. About a minute after the fall I knew that something was seriously wrong. Morgan has a very high tolerance for pain, as do most cancer kids because it is just part of their lives. I could just tell from her screams that her leg was either dislocated or broken.
Morgan had to be transported to the urgent care clinic at MSKCC by ambulance. Before the ambulance even arrived, I started fearing the worst and wondering if this a result of some sort of abnormality due to a relapse of neuroblastoma. And of course, since we were treated at a cancer hospital this was on the minds of all the doctors we came into contact with.
After a few hours in urgent care, it was determined that Morgan fractured her right femur. This is the largest and supposedly strongest bone in the body. If Morgan had a normal health history, they would have put a cast on her and sent her on her way to recover. But, since everyone was concerned about the possiblity of neuroblastoma on the bone, they wanted to get inside there and take a look at it. They also did not want to put a cast on it just in case she would need radiation to the bone. On Saturday morning, she underwent a three hour surgery to repair the fracture with plates and pins.
All preliminary reports indicate that this break was not a result of neuroblastoma. It is just a fracture and probably has something to do with her bones being in a weakened state due to all the chemo, accutane, radiation, etc. These preliminary reports are about 80 percent accurate and we will know the final reports within the next few days.
Today is the first day that Morgan will be allowed to get out of bed. However, when I left the hospital this morning (around 10:00) to come to the RM House to shower and type this update, she was still asleep. I guess the last few days are finally catching up with her because she crashed last night around 7:00. Today, she will be fitted for a brace and will begin physical therapy. When I left the hospital, the plan was that they would go ahead and do 3F8 today also. At first I was really concerned about how much extra pain this will put her in, but she is on a PCA (continuous dilaudid pump) so it may not be that bad.
As far as I know, we will still be able to go home on Friday. The orthopedic surgeon here stated that as long as there was an orthopedist at home who could oversee her care, we would be free to leave as soon as Morgan was comfortable with her brace and the pain was under control. Well, it just so happens that one of the studies that Jerry works on at Baptist (where he works) is with the pediatric orthopedic team. So, this should not be a problem at all.
Prayer Requests:
1) Please pray that the final results will also validate the fact that there is no neuroblastoma in Morgan's bone.
2) Please pray that she will recover quickly so that we can return home as planned. I think it will be easier for Morgan to recover at home.
3) Remember to pray for Holden. Jerry said that yesterday when he saw an airplane, he looked up at it and pointed saying, "Mommy, Sissy".
4) Remember to ask for complete healing for all of Morgan's friends who are fighting cancer or some other life threatening disease.
Look for another update tomorrow. Thanks so much for the care and concern that you have for Morgan.
God Bless,
Allison
Friday, October 10, 2003
Hello Friends,
The 10 day total for Lunch for Life was just over $50,000. This money will certainly be useful in finding a cure for this horrible disease. I really appreciate all of you who contributed to the cause.
Yesterday, Morgan was once again ready to go around 5:00. She asked to go to St. Catherine's park. After she played there for a while, she wanted to go to the robot toy store. This is what Morgan calls FAO Schwartz. (She refers to Toys R Us in Times Square as the ferris wheel toys store). Everytime we come to NY she gets a Madeline doll from FAO. After she made her selection, we walked back to the 3 Star Diner and had supper. The RM House had a dance group come in last night. They had a lot of audience participation. Morgan was participating over in her own corner. She was dancing to her own tune. But for all of you who know Morgan personally, I am sure this does not come as a surprise. Each time the dancers tried to get Grandma and myself up to dance, Morgan would come running over and direct us back into our seats. She decided that she would be the only dancer representing our family.
Treatment today was very interesting. A dance therapist came in to work with Morgan. I was not really sure how this would work because Morgan is not always receptive to new ideas or people. Suzie, the therapist, helped Morgan relax and actually her pain was not nearly as bad. She still needed one dose of dilaudid, but there was none of the screaming that normally accompanies treatment. She let us know she was in pain, but she was much quieter today. Even our roommate's father congratulated the Suzie on what a good job she did with Morgan. Suzie told us that she would come back next week to work with Morgan some more. I certainly hope she does.
Morgan still managed to pitch a fit this afternoon. It happened in McDonald's. She was set off because she wanted two patties on her hamburger instead of one. But, we all know the underlying cause was still the narcotics. Once again, I am glad to have Grandma with me. Whenever Morgan does this, Grandma will pick her up and carry her and this seems to soothe Morgan. I am really amazed at how far Grandma can carry Morgan. She weighs a solid 36 pounds and Grandma can carry her for blocks and blocks.
This weekend we are planning on going to Long Island to spent some time with Jerry's aunt Boonie and the rest of his family. We are looking forward to getting out of the city.
Prayer Requests:
1) Please ask for these treatments to work so that Morgan can have a long life in service to the Lord.
2) Ask for His protection over us as we are away from home.
3) Pray the Holden will be safe and happy while I am away from him. Jerry said that today was the first morning that he woke up calling for me.
4) Remember to pray for all of the other children who are fighting this monster called cancer.
I will do another update on Monday. Thanks so much for checking on Morgan and for praying for her.
God Bless,
Allison
Thursday, October 9, 2003
Hello Friends,
Yesterday we had another great afternoon. Morgan decided she was ready to go to Central Park around 3:00. By the time we got there, she had already fallen asleep in her stroller. So, we just parked and let her rest. Mom, Renae, and I did some people watching, which can be quite interesting in New York City. Then, when Morgan woke up she wanted to go to St. Catherine's Park. This is a small park across the street from the hospital. We took her there and she played for about 30 minutes. She was in a great mood most of the afternoon. The only thing she complained about was her feet hurting. This is a common side effect from 3F8, but after taking Tylenol she was fine. We have a bottle of dilaudid for pain, but I prefer to give her as few narcotics as possible. We were told at one time that they preferred for us not to use Tylenol because it could mask any fevers. But since we are the ones that have to keep her calm after she has narcotics, I made the decision to use Tylenol. Am I a rebel or what?
Today her treatment was nothing out of the ordinary. We still kept her pain controlled with one dose of dilaudid. She was not happy to leave clinic, but she did not scream quite as loud as she has in the past. She came back to the room and rested for all of 20 minutes. Then she sat up and announced that she was ready to go to the park. We told her she had to wait until the laundry finished washing. She was not too happy about that, but after we put in a Madeline video she seemed to calm down. I guess that now the plan is to go to the park after the laundry is finished.
Renae flew home today. We really enjoyed having her here with us. It seemed her time with us flew by and I can not believe that it is already Thursday. This is a good thing when one is counting down the days until it is time to go home.
Prayer Requests:
1) Ask the Lord to bless this treatment and use it for Morgan's total and complete healing.
2) Pray for the Lord to protect us in our travels.
3) Ask for a spirit of contentment for Holden as he is separated from me and Grandma. Although, I am sure he was quite happy today when Paw-Paw picked him up from school. Holden is absolutely crazy about his Paw-Paw.
4) Ask for healing for all of the other children who are fighting so hard and remember the families who are dealing with the loss of their children.
IMPORTANT ANNOUCEMENT OCTOBER 1, 2003
We am joining with other neuroblastoma parents in an effort to help Morgan and all of her friends who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of all cases of cancer diagnosed in children. But, it accounts for 15 percent of all deaths from pediatric cancers. For children who are diagnosed after one year of age (as Morgan was) there is no known cure for this disease. The survival rates are pathetic.
Pediatric oncology research receives almost no funding. The NCI granted pediatric oncology $30 million dollars last year. This was to research all types of juvenile cancers. Breast cancer alone receives this much money from NCI. Of this $30 million, neuroblastoma research gets a very small percentage.
We are asking each of you to do something very simple, but it could have a huge impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends. It is kind of like a chain letter, but with a very good outcome.
You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Morgan Barnes in the following ways:
* online (it is a secure site) by clicking on this link LUNCH FOR LIFE
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108
Thanks so much for helping us find a cure for this horrible disease. I just hope it comes in time to save Morgan and all of her friends who are fighting this monster with so much strength and courage.
I will try to do another update tomorrow. Caringbridge posted a notice that they are changing the server so the site will be down for a while. I don't think that is going to happen until Saturday so I should be able to post something after treatment tomorrow. Thanks so much for checking in with us and for remembering Morgan and the rest of our family in your prayers.
God Bless,
Allison
Wednesday, October 8, 2003
Hello Friends,
Yesterday Morgan slept until 5:00 pm. Then she was ready to hit the street. We took her to Toys R Us in Times Square where she rode the ferris wheel, convinced Grandma to buy her a new Little Mermaid doll, and enjoyed herself thoroughly. Then, we stopped to have dinner and came back to the RM House.
Today, treatment was very similar to yesterday. She had a lot of pain, but we were able to manage it with just one dose of diluadid. She is now in the room attempting to rest and insisting that Grandma pat her back. Poor Grandma can't even stop the back patting for a single second. Morgan ordered me to stop talking so I figured it would be a good time for me to come down to the computer lab to do an update. Hopefully, Morgan will have another good afternoon.
Yesterday, we were very upset to learn that two of Morgan's friends lost their battles. Little Noah (www.caringbridge.org/hi/noah)was on the transplant unit with Morgan. In fact, he was transplanted the day before Morgan. Jessica(www.caringbridge.org/mn/jessicalynnnielsen) was Morgan's roommate the first time we came to New York to do antibodies. She was 13 and had been fighting neuroblastoma for quite a while. She had the most beautiful blue eyes and fought this horrible disease with such grace and dignity. Please remember these two families in the coming days. Ask for the Lord to provide them with a peace that surpasses all understanding and for his strength to carry them through this difficult time.
Prayer Requests:
1) Ask the Lord to bless this treatment that Morgan is receiving. Ask Him to use it so that she can have total and complete healing and enjoy a long life in His service.
2) Ask for His protection over us as we are away from home.
3) Ask the Lord to comfort Holden during our time away from him. It is especially hard on Holden when Mommy and Grandma and both away. But, I want to send out a big thank you to my friends and family members who are keeping Holden. I know they are doing a good job of loving him while we are away.
4) Remember to pray for all of Morgan's friends who are fighting against cancer too.
IMPORTANT ANNOUCEMENT OCTOBER 1, 2003
We am joining with other neuroblastoma parents in an effort to help Morgan and all of her friends who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of all cases of cancer diagnosed in children. But, it accounts for 15 percent of all deaths from pediatric cancers. For children who are diagnosed after one year of age (as Morgan was) there is no known cure for this disease. The survival rates are pathetic.
Pediatric oncology research receives almost no funding. The NCI granted pediatric oncology $30 million dollars last year. This was to research all types of juvenile cancers. Breast cancer alone receives this much money from NCI. Of this $30 million, neuroblastoma research gets a very small percentage.
We are asking each of you to do something very simple, but it could have a huge impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends. It is kind of like a chain letter, but with a very good outcome.
You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Morgan Barnes in the following ways:
* online (it is a secure site) by clicking on this link LUNCH FOR LIFE
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108
Thanks so much for helping us find a cure for this horrible disease. I just hope it comes in time to save Morgan and all of her friends who are fighting this monster with so much strength and courage.
Thanks for continuing the check on Morgan's progress and to lift her daily in prayer.
God Bless,
Allison
Tuesday, October 7, 2003
Hello Friends,
Yesterday around 4:00 pm, Morgan sprang into action. Well, it was actually slower than a "sprang" but we still managed to get her out and about. We headed to Central Park where she rode the carousel three times. Then, we did a little shopping on the street. I got her some of those Russian nesting dolls. She calls them her silly dolls and says that the big one is Grandma, the middle sized one is her, and the little one is me. I am not quite sure how she came up with that, but she is enjoying the dolls and that is all that matters.
We had dinner last night at our favorite diner, the 3 Star, and Morgan ate well. Then, we came back to the RM House where she decorated her own cupcake and then ate most of it. Morgan now weighs over 36 pounds and she has been off of the appetite stimulant since Tuesday, so we are very pleased by this.
Morgan crashed before nine last night and Mommy and Grandma followed soon after. We got a good night's rest to prepare us for a day at clinic today.
I think the treatment was somewhat easier today than yesterday. She only required one dose of dilaudid. But, it is still taking her some time to recover from it. We stopped by the park again today on our way back to the room, and she played for about five minutes. Then, we got back to the room where she screamed and cried for about 45 minutes. She rested for 15 minutes, woke up and was fine for about an hour, and then she fell asleep again. She is now asleep and we are hoping that we can have an enjoyable afternoon again today after she wakes up.
Grandma's friend, Renae, flew up this morning to visit with us. It is nice to have her here to break some of the monotony of the day. She is going to stay with us until Thursday.
Prayer Requests:
1) Ask the Lord to bless this treatment that Morgan is receiving. Ask Him to use it so that she can have total and complete healing and enjoy a long life in His service.
2) Ask for His protection over us as we are away from home.
3) Ask the Lord to comfort Holden during our time away from him. It is especially hard on Holden when Mommy and Grandma and both away. But, I want to send out a big thank you to my friends and family members who are keeping Holden. I know they are doing a good job of loving him while we are away. (Last night, Holden said "I love you" to me over the phone. This was a first. I am not sure if anyone else could have made out the words I love you, but I surely could.
4) Remember to pray for all of Morgan's friends who are fighting against cancer too. My dad called today to tell us that he saw a child with no hair in the grocery store in Lewisville so he started a conversation. This child also has neuroblastoma and is being treated at Brenner. I am hoping to be a source of support to this family, just as the Cain family offered us tremendous support in the early days of Morgan's fight against this monster. I do not even know the child's name, but please remember him and his family in your prayers.
IMPORTANT ANNOUCEMENT OCTOBER 1, 2003
We am joining with other neuroblastoma parents in an effort to help Morgan and all of her friends who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of all cases of cancer diagnosed in children. But, it accounts for 15 percent of all deaths from pediatric cancers. For children who are diagnosed after one year of age (as Morgan was) there is no known cure for this disease. The survival rates are pathetic.
Pediatric oncology research receives almost no funding. The NCI granted pediatric oncology $30 million dollars last year. This was to research all types of juvenile cancers. Breast cancer alone receives this much money from NCI. Of this $30 million, neuroblastoma research gets a very small percentage.
We are asking each of you to do something very simple, but it could have a huge impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends. It is kind of like a chain letter, but with a very good outcome.
You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Morgan Barnes in the following ways:
* online (it is a secure site) by clicking on this link LUNCH FOR LIFE
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108
Thanks so much for helping us find a cure for this horrible disease. I just hope it comes in time to save Morgan and all of her friends who are fighting this monster with so much strength and courage.
Thanks for continuing to prayer for Morgan. Check for another update tomorrow.
God Bless,
Allison
Monday, October 6, 2003
Hello Friends,
Greetings from The Big Apple! We arrived last night around 9:00 after a very uneventful flight. We checked in to our room around 10:15. Morgan slept for the entire second half of the flight, so she was wide awake until after midnight.
Today's treatment was pretty harsh. I guess taking eight weeks off made us forget about how much pain there is. She required three doses of dilaudid to make it through. The pain lasted for about 30 minutes. After treatment, she was in her typical "crazy" state of mind. However, it is nice to have Grandma here because she does a pretty good job of soothing Morgan. Morgan asked to stop by the park on the way back to the Ronald McDonald House. She did not want to play; she was content just sitting and watching the others play. Then, we came back to the room and she started having spells. For a while, she would be very happy and then she would get very angry. I was expecting her to take a nap, but so far she is wide awake and watching videos. Once I know that her state of mind has recovered from all of the pain medication, we may venture out to Central Park or something.
Prayer Requests:
1) Ask the Lord to bless this treatment that Morgan is receiving. Ask Him to use it so that she can have total and complete healing and enjoy a long life in His service.
2) Ask for His protection over us as we are away from home.
3) Ask the Lord to comfort Holden during our time away from him. It is especially hard on Holden when Mommy and Grandma and both away. But, I want to send out a big thank you to my friends and family members who are keeping Holden. I know they are doing a good job of loving him while we are away.
4) Remember to pray for all of Morgan's friends who are fighting against cancer too. Every time we come back to New York, I am reminded just how many children there are who have been stricken with neuroblastoma and other types of cancer.
IMPORTANT ANNOUCEMENT OCTOBER 1, 2003
We am joining with other neuroblastoma parents in an effort to help Morgan and all of her friends who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of all cases of cancer diagnosed in children. But, it accounts for 15 percent of all deaths from pediatric cancers. For children who are diagnosed after one year of age (as Morgan was) there is no known cure for this disease. The survival rates are pathetic.
Pediatric oncology research receives almost no funding. The NCI granted pediatric oncology $30 million dollars last year. This was to research all types of juvenile cancers. Breast cancer alone receives this much money from NCI. Of this $30 million, neuroblastoma research gets a very small percentage.
We are asking each of you to do something very simple, but it could have a huge impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends. It is kind of like a chain letter, but with a very good outcome.
You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Morgan Barnes in the following ways:
* online (it is a secure site) by clicking on this link LUNCH FOR LIFE
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108
Thanks so much for helping us find a cure for this horrible disease. I just hope it comes in time to save Morgan and all of her friends who are fighting this monster with so much strength and courage.
I will do another update tomorrow. Thanks so much for showing your love for Morgan by checking in with us.
God Bless,
Allison
Monday, September 29, 2003
IMPORTANT ANNOUCEMENT OCTOBER 1, 2003
We am joining with other neuroblastoma parents in an effort to help Morgan and all of her friends who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of all cases of cancer diagnosed in children. But, it accounts for 15 percent of all deaths from pediatric cancers. For children who are diagnosed after one year of age (as Morgan was) there is no known cure for this disease. The survival rates are pathetic.
Pediatric oncology research receives almost no funding. The NCI granted pediatric oncology $30 million dollars last year. This was to research all types of juvenile cancers. Breast cancer alone receives this much money from NCI. Of this $30 million, neuroblastoma research gets a very small percentage.
We are asking each of you to do something very simple, but it could have a huge impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends. It is kind of like a chain letter, but with a very good outcome.
You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Morgan Barnes in the following ways:
* online (it is a secure site) by clicking on this link LUNCH FOR LIFE
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108
Thanks so much for helping us find a cure for this horrible disease. I just hope it comes in time to save Morgan and all of her friends who are fighting this monster with so much strength and courage.
Hello Friends,
Finally . . . after many many weeks of continuous antibiotics, Morgan is over her ear infection. Praise the Lord! Thank you so much for your prayers! Now Morgan can enjoy a break from antibiotics (and so can Mommy and Daddy).
Holden's birthday was wonderful. We celebrated with a small family party on Saturday. The weather was beautiful and I think everyone had a really nice time.
So, where are we going from here? On Wednesday, Morgan will start her GMCSF shots. These shots will give her white blood count a boost in order to help the 3F8 treatment attack any neuroblastoma cells that could still be floating around in her body. On Sunday, Morgan, Grandma Vicky and I will fly to New York to start the fifth round of 3F8 on Monday. We are certainly not looking forward to it, but we know that it is necessary.
Prayer Requests:
1) Please ask for the Lord's protection over us as we travel up North. Ask for special blessings over Holden because it is very hard for him to be separated from me for two weeks (and I find it difficult to be away from him -- I can not even say his name without tears coming to my eyes while I am away from my precious son). His needs and issues seem to be overlooked sometimes, but he is a wonderful child who has adapted very well to our unique situation.
2) Ask for the Lord to use this antibody treatment to totally rid Morgan's body of this horrible disease forever. Ask for His guidance and for Morgan to develop HAMA at the perfect time for her body to be able to fight off any new cancer cells.
3) Remember to pray for the other children who are fighting this same disease: Cam, Carl, Cole, Harrison, Jake, Jessica, Jonathan, Sarah, Sophia, Trey, Taylor, Zoe, Carolyn, Jillian and so many others.
I will do another update on next Monday after Morgan has her first round of antibodies. Thanks so much for your continued prayers for Morgan.
Fundraiser Info:
Many many thanks and much love goes out to Grandma Penny. She and some of her friends faithfully worked and worked and worked to put together a cookbook. It will be sold to raise funds to cover the cost of Morgan's medical care at Sloan-Kettering Cancer Center (which is not covered by our insurance). The cookbooks should be here any day now and when they come in I will certainly put purchasing information on this site.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
God Bless,
Allison
Thursday, September 25, 2003
Hello Friends,
The only medical issue Morgan is dealing with right now is that ear infection that just will not go away. After speaking with Dr. Driscoll last week at Duke, I called her ENT doctor, Dr. Rees, at Baptist. She recommended yet another antibiotic. So now Morgan is taking omniceph for 10 days. Dr. Rees also instructed us to take her to the regular pediatrician for that right ear to be examined again after a 10 day course of antibiotics. We are praying that this will do the trick in getting rid of this infection once and for all.
Morgan has been on antibiotics now for approximately 30 days. The antibiotics are really doing a number on her tummy. I will not go into detail, but everyone out there who has ever taken really strong antibiotics may have some idea of what is going on here. Needless to say, we are all looking forward to being able to stop taking these drugs. Morgan is also taking megace, the appetite stimulant, again. Accutane makes Morgan lose her appetite so she dropped to 31 pounds during her last cycle. Dr. Driscoll said he would like to see her gain a few pounds. Grandma Vicky introduced Morgan to croissants, and she eats them as quick as we can buy them. Our goal is to get her to at least 35 pounds and the way she is putting down croissants she should be there really soon.
On Saturday, we went to Tanglewood Park for a family fun day sponsored by the oncology support group at Brenner Children's Hospital. The weather was glorious and we all had a great time. Morgan and Holden even had the opportunity to ride a horse for the first time.
Morgan continues with preschool, speech, and dance class. She is enjoying all three. We are still praying for her social skills to improve. It is obvious that she still does not understand how to join into a group, but I think we are starting to see some improvements.
The biggest struggle we are dealing with right now is bedtime. Morgan has a fear of being in her room by herself. We were dealing with this some just prior to her being diagnosed with cancer. She will only fall asleep if either Jerry or myself is standing by her room door so that she can see us. Then, she always wakes up and finds her way to our bed before the sun comes up in the morning.
We will celebrate Holden's second birthday on Saturday. I can not believe that my "baby" will be two on the 28th of this month (or that I will be 30 on the 30th -- YIKES). But, I am very very happy because I remember how bad things were this time last year. Morgan had just finished her third round of chemo and it made her so sick that we had to stay inpatient for about 5 extra days. I did not think she would be able to go to Holden's first birthday party. I am so proud of how well she is doing now!
Prayer Requests:
1) Pray for the Lord to cure Morgan's ear infection so that she can get a break from the antibiotics.
2) Ask the Lord to grant Morgan a spirit of peace and remove the spirit of fear that she currently has. Ask Him to protect her from the evil that is causing her fears.
3) Pray that there will never again be a single cancerous cell in Morgan's body.
4) Ask for complete healing for all of the children who are currently fighting this hideous disease.
Fundraiser Info:
Many many thanks and much love goes out to Grandma Penny. She and some of her friends faithfully worked and worked and worked to put together a cookbook. It will be sold to raise funds to cover the cost of Morgan's medical care at Sloan-Kettering Cancer Center (which is not covered by our insurance). The cookbooks should be here any day now and when they come in I will certainly put purchasing information on this site.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I will do another update after Morgan sees the pediatrician on Monday.
God Bless,
Allison
Thursday, September 18, 2003
UPDATE: SEPTEMBER 19
We just received the MIBG results. Morgan is still showing NO EVIDENCE OF DISEASE. Praise be to God! We are so thankful to Him for all He has done for our family in the last 15 months. We are also thankful to all of you who have continually prayed for Morgan. Our family was certainly covered in prayer yesterday and we could feel it.
Hello Friends,
The last two days have been incredibly exhausting. I drove Morgan to Duke yesterday so that she could have her heart tests, labs drawn, and the MIBG injection. We went back today so that she could have the MIBG scan.
On Wednesday, she absolutely refused to cooperate for the pulmonary study. She was supposed to blow into a pipe so they could measure heart and lung function. By doing this, she would register a number. The target number is 1000 and since she would not participate, she only got a 500. However, this is not an indication that anything is wrong with her. I believe it just proves something I have known for a very long time -- Morgan is a very strong willed child!
Morgan was surprisingly cooperative for the EKG. She normally fights this one too, but this time she just relaxed on the bed and watched Cinderella. Her EKG results came back normal -- Praise be to God!
They also performed a blood test to see how well her immune system is functioning these days. It will be a while before these results come back. But, we did discuss today that we need to start thinking about re-immunizing Morgan. Often, children who go through bone marrow or stem cell transplant have to get all their shots because the new bone marrow does not remember these shots they received in infancy. Her other blood counts came back looking great. In fact, I think it was the first time in a while that the three main counts (platelets, hemoglobin, and white blood cells) all came back in the normal range.
Morgan was examined today by Dr. Driscoll. I asked him to look in her ear just to make sure that infection was disappearing. He looked and unfortunately, the right ear is still red. This means there may be another ENT visit in Morgan's near future. But, we will cross that bridge when we get to it. The only other thing the doctor remarked on is that Morgan needs to put on some weight. During this most recent round of accutane, Morgan has dropped to about 14.6 kilos (from 15.8 kilos). He suggested that we start giving her an extra can of Pediasure each day.
The MIBG scan today seemed to take forever. They started a few minutes after noon. At 1:20, a doctor came through the waiting room and told me that she should be finished by 2:00. By 2:30, I was very nervous so I went to find out something. They told me that the machine messed up during the scan so it would be another thirty minutes. In forty-five minutes, the scans were finally finished. At 4:00, we paged the nurse practitioner to see if we could get some results but she never returned the page. So we are assuming that the results were not in yet and we will find out something tomorrow and I will most certainly let everyone know the results as soon as we find out.
The most exciting part of the day was driving back during a hurricane! I have never driven in rain that hard or winds that strongs. I made sure that I prayed before we set out on the road and of course the Lord brought us back home safely.
As far as our lives out of the medical realm . . . On Saturday, we took the kids to Tweetsie Railroad and Amusement Park. We had a great time and the weather was absolutely beautiful. On Tuesday, Morgan started her speech class. She is in a class with two kindergarten students and she seemed to enjoy it. I am glad that it is not a one-on-one situation because Morgan really needs extra opportunities to be around other children.
Prayer Requests:
1) Continue to ask the Lord for good test results and for Him to grant Jerry and I patience as we are waiting for the test results to come back.
2) Pray that the Lord will never again permit cancerous cells to grow in Morgan's body.
3) Remember all of the other children who are fighting the battle against cancer!
Thanks so much for lifting our family in prayer and for continually checking in on Morgan's progress. I will post another update as soon as we know the results of Morgan's MIBG scan.
God Bless,
Allison
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
Thursday, September 11, 2003
Hello Friends,
The adventure continues! Morgan woke up last night with a fever of 103.2 again. We called the hospital, and they said it would be okay to wait until this morning to bring her in to be checked out. We already had a clinic appointment today. Morgan was complaining that her ear was hurting. I was pretty sure that this was still a result of the ear infection. I figured that perhaps the amoxicillian they gave her did not quite get the job done. Of course, this does not mean that we still are not worrying.
Dr. McLean examined Morgan this morning and he said that her left ear looks perfect. The right ear appeared to have a the remainder of an ear infection in it, but he thought that it would clear up on its own. Therefore, he did not write her a prescription for anymore antibiotics. He said he was pretty confident that what he was looking at would not have caused such a high fever. But, we discussed the fact that she has a cold and perhaps her body is just trying really hard to fight this stuff off. In the back of my mind, I am wandering if this means that something very terrible is going on in her body. But, at least she will have an MIBG scan next week so we can perhaps get to the bottom of this.
At 1:00, Morgan had an appointment for another hearing test. The audiologist took one look at that right ear and said it had a lot of fluid behind the eardrum. She suggested that we see one of the ENT doctors to get a second opinion on whether or not Morgan needed more antibiotics. The hearing test results were pretty good. The hearing loss in Morgan's left ear has remained the same, or may even be slightly better than the last test. However, the right ear showed more hearing loss. The audiologist believed this was a direct result of the fluid in her ear and not a sign that her hearing is getting any worse. Praise the Lord for this bit of good news!
We then made our way over to the ENT doctor who was nice enough to work Morgan into her schedule. She said that there was indeed fluid behind Morgan's ear and wrote her a prescription for another antibiotic. However, she could not say for sure if the high fever was actually caused by this ear situation.
Morgan is currently on the sixth day of the fourth cycle of Accutane. Her skin is looking horrible and she is not feeling all that great. She is complaining that her shoulder and hip hurt. We are just hoping and praying that these fevers and pains are a combination of the cold she has, the ear infection, and the side effects of Accutane.
Morgan does not have to return to clinic until after we come home from our next trip to New York. The appointment is scheduled for October 23. She will have another hearing test on November 11. Also, it was recommended today that she receive regular check-ups from the ENT doctors because children with hearing loss need to be careful about having too many ear infections. If ear infections continue to be a problem for her, she will probably have tubes put in her ears.
In other news, Morgan enjoyed her first dance class. School is still going well for her. They had a parent's night tonight so we were able to go in and see some of the work that she has been doing. My main concern for Morgan's schooling right now is that she does not really interact with other children. She stands off from the rest of the group and this really breaks my heart. I think that she really wants to join the group, but she just does not know how. I guess this is what a year of being isolated from most other people will do for a small child. I am hoping that she will overcome this soon and can begin to fully interact with other children. We are still waiting for the speech pathologist at Lewisville School to get in touch with us. I have called and left a message for her, but she has not returned the call. So far, I am not very impressed with her speech services (or the lack there of).
Prayer Requests:
1) Ask that the Lord bless Morgan's upcoming tests and scans next week. Specifically, ask Him to give us evidence that Morgan has been totally healed by His loving hand and there is no evidence of neuroblastoma in her body. Ask Him to reveal to us that her heart and the rest of her body is functioning just as it should.
2) Pray for Morgan's social skills to improve so that she can make one more step toward becoming a normal preschooler.
3) Remember all of the other children who are fighting this monster, and their families too!
Please look for another update next week after we have made our trip to Duke. Thanks for taking the time to check in with our family and to pray for Morgan.
God Bless,
Allison
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
Thursday, September 4, 2003 12:13 AM CDT
Hello Friends,
Morgan had her pre-kindergarten screening with the school system this morning. She is either average or above average in most areas. However, she does have some difficulty with her speech. I have never really noticed this before, but as her mother I guess I have just learned to tune my ear into what she is saying. The first problem is that she speaks really low and it is very hard to hear her. The second problem is that she leaves certain sounds out of words. This may come from the fact that she has had some hearing loss and does not hear those sounds, and therefore does not say them when speaking. She is now considered speech and language disabled and is qualified to receive services through the school system. She has an individual education plan and everything. It was kind of weird for me to be on the parent side of one of these conferences. As a guidance counselor, I have sat through a lot of them, but I never even considered the fact that one day my own child would have disabilities. But, this is such a small issue that it does not even show up on the radar. This is something we can work on. I will take it any day compared to all of the other things that could possibly go wrong for her.
She will receive services at Lewisville Elementary School. She will be served two days a week for thirty minutes each day. They will work around her preschool schedule so that she can continue at Calvary.
I am going to call the clinic today and schedule a check-up for Morgan. The only other thing we have scheduled for next week is another hearing test on September 11. Hopefully, it will show that she has not suffered from any more hearing loss. If she has, then she made need hearing aids. But then again, this is the small stuff.
Overall, things are going just fine. Morgan will start dance class next week and she is really looking forward to that. Morgan is continuing to enjoy preschool and seems to be doing well. I am excited because her class is having "Muffins for Moms" tomorrow morning. I can remember a time when I was working and would sometimes not be able to attend this type of event. Well, not anymore . . . I now have my priorites more in line than ever before. Speaking of which, I have gone back to work part-time. It is a wonderful situation and I am able to work a very flexible schedule. I am a part-time guidance counselor at Southeast Middle School in Kernersville. It gives me the opportunity to get out of the house, but I am still able to spend a majority of my time with the kids.
Prayer Requests:
1) Pray that Morgan's MIBG scan on 9/18 will show no evidence of disease. And ask the Lord to bless all of the other tests that she will have.
2) Pray for a Morgan to have a speedy recovery from this ear infection. (She seems to be a lot better).
3) Please remember all the other children who are doing battle against cancer. Jake was finally discharged from the hospital -- praise the Lord! JAKE'S PAGE
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I will do another update after Morgan has another hearing test or when she returns to clinic (whichever comes first). Thanks for the continued prayers and support for our family.
God Bless,
Allison
Monday, September 1, 2003
Hello Friends,
I guess my update yesterday was a little premature. Last night, Jerry and I stayed up to watch a movie. Around 1:00 this morning, I went into Morgan's room to check on her. She was very warm to the touch. Being a "cancer mom" I always have a thermometer close at hand. I took her temperature, and it was a very high 103.7. We were absolutely shocked. There were no signs the entire day that anything was wrong with her. Of course, we called her oncologist and with a fever so high, they had no choice but to tell us to bring her in to the emergency department.
Jerry packed his bags expecting a rather lengthy hospital stay. Of course, in the back of our minds we were expecting the worst. The only other time Morgan has ever had mysterious fevers was in the weeks prior to her diagnosis with cancer. I stayed home so we would not have to wake Holden in the middle of the night. I was laying in bed praying and begging God to not allow this to be a sign of a relapse. At 1:47 am, the phone rings and I hear a nurse on the other line. Of course, this totally freaks me out. But, she started the conversation with, "your husband wanted me to call because Morgan will not let him leave her side".
It turns out that things are not that bad. Morgan had a raging ear infection. I could not have been happier if Ed McMahon would have shown up on my door step to award me the Publisher's Clearinghouse Prize. I began praying again and praising the Lord for allowing this to be a simple ear infection. God is good -- all the time.
Morgan and Jerry returned home around 4:00 this morning. Nothing like a night of excitement. It is now 10:15, and Morgan is still asleep. Holden of course stayed on his regular schedule so he was up and ready to roll at 8:00. Jerry and I are recovering from our sleepless night, but we are happy that this was not a more serious situation.
I would like to end this update with a tribute to a special friend. Arthur Calvin Cooke lived next door to my parents, but my kids new him only as "Mr. Ott". On pretty days, Mr. Ott could often be found sitting in a shady spot by his garage. This made it very easy to see him as we would approach Grandma and Paw-Paw's front door. He would always greet us with a smile. Mr. Ott received a lot of pleasure in watching the kids play in the yard. The kids adored Mr. Ott and would often ask to go visit him. Usually, he would have a "treat" of some type for his little buddies.
I vividly remember a day last summer when Morgan was able to make her first visit to her grandparent's house after her chemo had started. She was in the backyard playing with her cousins. Mr. Ott approached the yard and with a tremendous amount of concern, asked how Morgan was doing. As he looked at her, with her little bald head and a feeding tube protuding out of her nose I think I saw a small tear in his eye.
Mr. Ott passed away this weekend. I can honestly say that I am not looking forward to the next time Morgan asks to go visit with her friend. But, it makes me feel better to know that Morgan and Holden have yet another soul watching over them in heaven. I know that he will be missed. We would like to express our deep appreciation to Mr. Ott and his family for asking that donations in his memory be made to Morgan's Assistance Fund. This was a sincere act of kindness from a truly unique man.
Prayer Requests:
1) Ask for the Lord's blessings over Morgan's upcoming tests. Ask that the MIBG scan show no evidence of disease and the other tests show that her body is functioning normally.
2) Pray that Morgan will be over this ear infection in a few short days.
3) Pray for Mr. Ott's family as they are dealing with some very difficult times.
4) Continue to pray for Jake. He remains in the hospital and his white blood count is still practically nonexistant. His mother has asked that people pray for his white counts to come up, his fevers to stop, for him to be released from the hospital, and for strength for the entire family. JAKE'S PAGE
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I will do another update on Thursday after Morgan has her evaluation. Thanks for continuing to praying for our family.
God Bless,
Allison
Sunday, August 31, 2003
Hello Friends,
We finally made it through a weekend without Morgan developing a fever. Actually, we had a wonderful weekend. On Thursday, we drove to Cherry Grove, SC to retrieve Morgan from the beach. But, we drove to Myrtle Beach and stayed through the weekend as a family. It was so nice! The kids had a great time playing in the pool at the hotel and on the beach. We also took them to a mini-amusement park (thanks to our friends at Give Kids the World). I think I am the only person in the world who did not realize it was Labor Day weekend when I made our reservations. We came home today so we will be spending Labor Day here at home.
Tracy, Morgan's nurse practitioner at Duke, has gotten her tests scheduled. I think I may have come across in my last update as having a bad opinion of Duke. I do not. It is just that they transplant tons of kids and are very very busy. There is not a secretary who schedules appointments and such. The nurse practitioners do the scheduling. Therefore, it takes a little bit longer to get in touch with them. But, I have been very pleased with the care and attention Morgan receives at Duke.
Anyway, Morgan will have two days of testing on September 17 and 18. On 9/17, she will have a pulmonary function test, and echocardiogram, and immune system studies. On 9/18, she will have an MIBG scan. This scan involves her being injected with a radioactive isotope. This isotope attaches to neuroblastoma cells when present and causes them to "light up" on the scan. Please pray that there are none present in Morgan's body.
Morgan is still fighting that cold. But, this is understandable since her immune system is so much weaker than a "normal" person's. She has also developed a slight cough. But, she has not had anymore fevers and she seems to feel great. Hopefully, she will be back to 100% soon.
Prayer Requests:
1) Pray that Morgan's MIBG scan in September will show no evidence of disease and the other tests will show that her body is functioning normally.
2) Pray that she will finally be able to beat this cold and cough.
3) Continue to pray for Jake. He remains in the hospital and his white blood count is still practically nonexistant. His mother has asked that people pray for his white counts to come up, his fevers to stop, for him to be released from the hospital, and for strength for the entire family. JAKE'S PAGE
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I am not sure when Morgan will have another medical appointment. I feel pretty confident that her doctor's here in Winston will want to see her soon. On Thursday, I am taking her to have a preschool intake done by the local school system. I just want to make sure that this last year has not caused significant developmental delays for her. I will do another update after this intake. Thanks so much for continuing to lift Morgan in prayer.
God Bless,
Allison
Wednesday, August 27, 2003
Hello Friends,
This will be a short update because there is not a lot to report. I received an email from Dr. Kushner this morning and Morgan is HAMA negative. We view this as good news because there is something very comfortable about continually being in treatment. I do not think I am emotionally ready for Morgan to be totally out of treatment yet. I guess I feel like the more of these 3F8 treatments she gets, the higher her chances for beating this disease will be. We are scheduled to fly back to NY on October 5 and stay until the 17th. This time, Grandma Morgan is going with us.
Morgan's six month scans should be right around the corner (sometime around the first of September). Dr. Kushner gave us the approval this morning to have her scans done at Duke. On one hand, this is good because it is much easier to get to Durham than it is to get to New York. On the other, it is a bit frustrating to deal with Duke. I always find it hard to get in touch with the necessary people. For example, I have paged the person responsible for scheduling these scans twice today and she has not returned the page. I have also emailed Dr. Driscoll, Morgan's primary physician at Duke. I am hoping to hear back from someone today.
Morgan seems to be feeling better. Her cold is running its course. She has not had anymore fever since Saturday. She went to school on Monday and then she went on vacation. Morgan is at the beach right now with Grandma and Paw Paw. She made it pretty clear to Jerry and me that we were not invited. She was so excited about the trip and it seems as if she is having a ball. We miss her, but it is so nice devoting some individual time to Holden. As a second child, he has never really gotten much of that.
Prayer Requests:
1) Pray that Morgan's six month scans will show no evidence of disease.
2) Pray that the Lord will protect Morgan from this horrible disease ever returning to her body.
3) Pray for Jake. He is still in the hospital and having some difficulty. His mother has asked that people pray for his white counts to come up, his fevers to stop, for him to be released from the hospital, and for strength for the entire family. JAKE'S PAGE
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I will do another update once I am able to get in touch with the powers that be at Duke. I will let everyone know what Morgan's testing schedule will be like so that you can all pray very hard on those days. Thanks so much for your constant love and support.
God Bless,
Allison
Saturday, August 23, 2003
Hello Friends,
Obviously, Morgan thinks weekends are just too boring around here. She needs a little action to spice up our lives. Last night, we had great plans to take Morgan and Holden to their first highschool football game. This was a favorite activity of ours before we had kids. We just knew that Morgan would love to see the cheerleaders and the band, and Holden would just enjoy being part of the crowd (and probably running wild the entire time).
However, what is it they say about the best made plans? Around 4:00 yesterday afternoon, Morgan developed another fever. We called her oncologist to let her know what was going on and were told to just keep an eye on her. We thought we had a wonderful idea -- we would take her to the after hours clinic at her regular pediatrician's office. It was our intention to go in and let them rule out all of the basic stuff. We thought that perhaps this could be an ear infection caused by the cold she had last week. However, none of the regular pediatricians were working last night. The doctor on call took one look at her medical history and would not even come close to her. He told us we needed to take her to the emergency room. What a wimp! Since the whole purpose was to avoid a trip to the ER, we just took her home to wait.
The fever continued throughout the night and when she woke up this morning it was at 102. An hour later it had dropped to 100.3 and continued to drop for most of the afternoon. However, at 3:00 this afternoon it started to go up again. When it hit 102 again, I called the oncologist. We decided to take her in to the emergency room and let them rule out the basic stuff and do a culture just to make sure it is not an infection in her port. She also had a chest x-ray, urinalysis, etc.
We spent three hours at the emergency room this afternoon. But, the good news is that they did not keep us and she seems to be feeling better. All medical professionals involved seem to believe that this is another viral infection (cold). Her counts are good so she should be able to knock this thing out on her own. At least that is what we are praying for.
Otherwise, things are going well. Morgan enjoyed her first full day of preschool yesterday and is looking forward to going back Monday. We are of course hoping for no more fevers so nothing stops her from going to school.
Prayer Requests:
1) Please pray that this fever is indeed caused by a cold and not a sign that there is something more serious going on. It is so hard not to stay worried all the time when you are going through something like this.
2) Pray that Morgan is able to break the fever for good and she can enjoy just being a normal preschool student.
3) Please remember all of Morgan's cancer fighting buddies. Jake is still in need of a lot of prayer. He is still in the hospital trying to get those counts to come back up. He has now had 25 rounds of chemo and his entire family could use a little encouragement and a lot of prayer. JAKE'S PAGE
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I will do another update on Wednesday after we get the results of Morgan's HAMA test. Thanks for praying for Morgan.
In Him,
Allison
Thursday, August 21, 2003
Hello Friends,
I am sorry that I did not update yesterday. But, the results of the bone marrow tests still were not in yet. It seems as if the hospital was still experiencing delays due to the Great Blackout. I emailed Dr. Kushner last night and he responded this morning. He stated that the biopsy came back NEGATIVE (praise the Lord) and they were still waiting for final results from the aspirates. This confused me because normally aspirates are completed much quicker than biopsies. I emailed him back asking if I should be concerned about this -- actually I emailed him and asked him if they saw something suspicious that they were now taking a second look at. He emailed me back and basically stated that I should not worry because the preliminaries of the aspirates were fine, but they just had a backlog of bone marrows to look at due to the power going out last week. Therefore, we are rejoicing! The Lord has been so faithful to us in answering our prayers. Thank you so much for praying for Morgan. She has done so well in the last year and so much of that is due to the faithful prayers of all of you.
Wednesday, Morgan went to preschool and stayed for two hours. She had a wonderful time and was very happy about school. She wanted to go back today, but the class only meets on Monday, Wednesday, and Friday. Tomorrow she will begin her regular schedule and will stay at school for three and a half hours. I hope she continues to love school. The teacher said she did wonderful! I could never home school Morgan because she has always done so much better for others.
We had a routine clinic visit today at Brenner. Everything is fine. Her counts and chemistries are good. The only concern we have right now is the dry, itchy rash that she gets when she is taking accutane. But, since tomorrow is the last day of this cycle, her skin should be clearing up soon. They also drew a vile of her blood to be sent to NY for HAMA testing. We will know on Wednesday whether or not we are heading back in October.
Many of you know that I was within three classes of finishing my Masters when Morgan was diagnosed. Well, I started back to school last night. It felt kind of wierd going back. I certainly do not have the same motivation that I once had for getting this degree, but I am so close to finishing that it would be a shame to stop now. However, it was kind of funny listening to all of the other students complaining about their days and how tired they were after working all day and then having to go to school all night. Yes, that is a bit tedious, and I once complained about the same thing too. However, I now have a much better appreciation of what a bad day is. A bad day is sitting in a waiting room while your child undergoes major surgery to remove a hideous tumor from her three year old body. A bad day is when sitting in an emergency room listening to a doctor diagnos your daughter with a life threatening illness. A bad day is holding a bucket for your daughter while she vomits uncontrollably due to massive doses of chemo to prepare her for a stem cell transplant. We all have different perspectives on life. But, I must say that one way I have been truly blessed by all of this is that I no longer sweat the small stuff. The car won't start -- big deal. The kids spilled grape juice on the carpet -- so what. Morgan is showing NO EVIDENCE OF DISEASE -- NOW THAT IS SOMETHING TO GET EXCITED ABOUT!
Praise the Lord for all of the wonderful things that He has done for Morgan. Continue to ask Him to protect her from this wretched disease.
Prayer Requests:
1) Ask the Lord to provide Morgan with a long, cancer-free life and to never again permit a single cancerous cell to start growing in her body.
2) Pray the Morgan is still HAMA negative. We would like for her to have a few more of these treatments, even though she has had four. Four treatments is kind of like the magic number. If she is positive now, she will be finished with treatment. But, we would like her to do a few more before stopping if only for our peace of mind.
3) Remember the other children fighting this monsters. Jake is especially in need of prayer right now. He is in the hospital due to low counts and fever. JAKE'S PAGE
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
Thanks for checking in with Morgan. Please continue to pray for her.
In Him,
Allison
Monday, August 18, 2003
Hello Friends,
I want to start this update with a sincere "thank you" to all of you. We started this website one year ago today. It now has approximately 74,000 hits. This means that about 200 times per day people from all over the world are checking in to see how Morgan is doing. This means so much to us. And of course, your faithful prayers mean even more to us.
Morgan was discharged from the hospital today. It was a very interesting hospitalization. They gave her a pass yesterday, so we spent the entire afternoon at home yesterday. She also received a pass this morning so she could attend her first orientation class to preschool. It was nice; we were in the hospital without being in the hospital. She was officially discharged around 1:00 this afternoon. Her cultures never showed an infection and the fever stopped almost as soon as we checked in.
Morgan continues to limp. We are going to try not to be too concerned about this until we know for sure that it is not caused by the accutane. Thanks so much to all of the other neuroblastoma families who emailed me to offer me support and encouragement and share with me their children's experiences with accutane. It does indeed cause pain for lots of kids who take it.
I called New York today and asked if there was someone else available to give me the results of Morgan's CT scan. They just called back and her CT scan was NORMAL and her urine test was NORMAL too! Praise the Lord! The results of her bone marrow will be in Wednesday. This certianly makes us feel better about Morgan's recent symptoms. Please keep praying for good results on Morgan's bone marrow biospy too. Your prayers have worked for us for the last year and we are deeply grateful.
Now, on to non-medical stuff. Morgan attended her first day of preschool today. It was a very short class (20 minutes) just to prepare the kids for preschool. Morgan independently left me standing by the door and did not look back until I came to get her. The teachers said she did very well. On Wednesday, she will go for two hours. I hope it goes as well then. The normal four hour classes will start on Friday. I am just praising the Lord that Morgan's health is stable enough for her to attend preschool. Although, I must admit that while she was in class I sat in the car and cried as I watched all of the other parents enter with their "healthy" kids. I was thinking how unfair it was that my child had to leave the hospital to attend her first day while all of the other kids woke up in their own beds and went bopping out the door to preschool. Morgan is so "grown-up" now and part of her childhood is lost forever. I could accept that if I knew for certain that everything she has gone through in the last year would guarantee her a long, cancer-free life. But, the sad fact is that neuroblastoma is a hideous disease and it can come back and get you when you least expect it. I don't think I will again be able to wake up in the morning and know for certain that Morgan will make it to adulthood. Sad, isn't it?
Prayer Requests:
1) Pray that Morgan's limp is due to bone, muscle and joint pain caused by accutane and is not a sign that cancer has returned to her body.
2) Pray that we will get good news from Morgan's bone marrow aspirates and biopsies.
3) Remember to pray for the other children with cancer. Jake (www.caringbridge.org/nc/hopefor) is just now beginning to have falling counts from his last round of chemo. Pray that he recovers quickly. Jake and his mom are really special to Morgan and me.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I will do another update after we get the results of Morgan's bone marrow tests. Thanks for all of the love, suppport, and prayers you have shown our family over the last year.
In Him,
Allison
Sunday, August 17, 2003
Hello Friends,
We are all a bit dazed and confused right now at the Barnes house. Our weekend got off to a pretty good start. We attended Morgan's benefit yesterday and had a wonderful time. It was a huge success. Thanks to Grandma Penny and all of her friends for all of their hard work.
Morgan acted like she felt tired for pretty much the whole day. I noticed she was warm to the touch around supper time and I took her temperature and it was around 100.5. I called Brenner and they said to continue to watch her. Last night, it got up 102 so we had to take her in. Morgan is in the hospital right now. It seems as if her fever broke over night so maybe there is a chance that we will get out today.
Jerry and I are very concerned. Morgan also started limping yesterday. Two of her original symptoms when she was diagnosed with this horrible disease were fever and limping. We have heard that sometimes accutane, one of her meds, can cause bone and muscles pain. We are just praying that this is the cause.
Morgan's doctor in New York is out of the office until Wednesday so we will probably be delayed until then in getting the results of the tests that she had last week. It was hard enough waiting before, but now that she is showing strange symptoms it is absolutely agonizing.
Prayer Requests:
1) Pray for these symptoms to not be signs of a relapse. Pray that she is still in remission and this horrible disease will never again invade her body.
2) Pray for the Lord's blessings on Morgan's tests. Pray that all of the results will come back in her favor.
3) Please continue to pray for the other children with this disease -- it is a real beast.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I will do another update as soon as there is something to report. Thanks so much for lifting Morgan in prayer.
In Him,
Allison
Thursday, August 14, 2003
Hello Friends,
Let me start off by saying that the Lord is really looking out for the Barnes Family. We were able to get out of New York City before the power went out. Aunt Debbie called and told us the news and we were shocked to hear that the whole city is in the dark. We left this morning around 7:30. The longer I thought about it the more I realized what a difficult situation that would be -- I can not even imagine being up there with two small children in a hot, dark room or even worse to be trapped on an elevator or in the subway. My heart truly goes out to our friends who are still there especially Taylor and his mom who are supposed to be returning home Alabama tomorrow. We are thinking of you guys!
Yesterday, Morgan had a CT scan and an bone marrow biopsy performed. It went well and she felt good after it was all over. Last night, we went to FAO Schwarz and it was certainly sensory overload for Holden. He really liked the place as you can imagine. Morgan is a regular there and enjoyed showing her brother around.
As you can probably guess, we do not have any results of Morgan's tests back so keep praying for good news. Maybe we will know something when the power comes back on. We will update the page as soon as we hear something.
I had a paranoid mother attack today. After we came home, I was looking at Holden. Both of the kids have had colds (now I do) and noses have been running like crazy around here. Holden appeared to have dark circles under his eyes, little red spider veins on his face and his skin was really pale. These are some of the same things that were going on with Morgan last year before she was diagnosed. Well, I told myself it was just his cold for a few hours, but then I decided that he needed to be seen by the doctor. I called his pediatrician and they worked him in (one of the benefits of going through something like this). Another benefit is that I can pretty much tell the regular pediatrician what I would like for them to do in order for me to keep my peace of mind. The doctor told me that the dark eyes and red spots are common with sinus congestion and he will be fine. But, she did order a complete blood count, just so I could keep my sanity. Anyway, Holden's blood counts came back fine and he is just getting over his cold.
Prayer Requests:
1) Continue asking the Lord for his blessings over Morgan's tests. Specifically ask that they will show no evidence of disease.
2) Pray for the Lord to grant Morgan complete and total healing and never allow this hideous disease to return to her body.
3) Remember all of our friends who are fighting this same battle (especially those who are in the dark tonight).
Fundraiser Info:
There will be a hamburger/hotdog supper and bake sale on August 16 at Pilot Fire Department in Thomasville. It will start around 11:00 am.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I will do another update as soon as we hear something regarding Morgan's tests. Thanks so much for praying for Morgan.
In Him,
Allison
Saturday, August 9, 2003
Hello Friends,
I am sorry that I did not do an update on Thursday. I just never found the time to get down to the computer lab. Morgan's treatments on Thursday and Friday went just fine. She had some pain, but it was manageable. Her behavior following treatment was okay too.
The program dilemma was solved. We never found the original one, but I took the subway to the theater at Times Square and purchased a new one. It was an adventure taking the subway during rush hour. But, I was alone so I was able to navigate things just fine. Morgan never knew that the first one vanished so all is well. It is a good thing too, all she talked about yesterday was showing her Beauty and the Beast book to her daddy.
We are home and absolutely thrilled. Morgan stayed up pretty late last night. It is so cute to watch her after she comes in from one of her long New York trips. She runs in and out of her room like she has never seen any of her toys before. This was partially true this time because she still had lots of things from her birthday party that she did not really have a chance to play with.
On Tuesday, we are heading back to New York. It should not be so bad this time because we will only be there for two nights. Morgan will have a CT scan and bone marrow aspirates and biopsies performed on Wednesday and we have a very early flight out Thursday morning. Jerry is going to try to work half a day on Thursday. We will see how that goes since we are getting up at 3:00 am to make it to the airport in time. We are also trying something new this time. We are going to take Holden to NY with us. Since he is not yet two, he can fly for free. Since it is a short trip, we thought we would try to keep the family together.
I almost forgot to mention the best news of all. We received the schedule for our next round of antibodies. If all goes according to schedule, Morgan will have another treatment starting on October 6. That is not a misprint. We get eight wonderful weeks at home in NC. Now, she will probably have to go back up for her six month scans but we should not even have to stay for a week. We are thrilled about this.
Prayer Requests:
1) Pray for the Lord's blessings on Morgan's upcoming tests. Ask for them all to come back showing no evidence of disease.
2) Pray for the Lord's protection over our family as we take yet another trip to New York.
3) Remember the other children who are fighting cancer.
Fundraiser Info:
There will be a hamburger/hotdog supper and bake sale on August 16 at Pilot Fire Department in Thomasville. It will start around 11:00 am.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
Unless something important happens, I will do another update after we return home from New York on Thursday. Thanks for continuing to check on Morgan and for keeping her in your thoughts and prayers.
In Him,
Allison
Wednesday, August 6, 2003
Hello Friends,
Today and yesterday have been a bit different for Morgan. She has not pitched her normal fits and she has not napped. I thought this would be a disaster for the bus tour last night, but it turned out okay. When I finished the update yesterday, I went back to the room and she still wanted to go to the park. We went and she played for a while, then she said she was ready to go to the restaurant. We took Becky out to dinner for her birthday. After dinner, we boarded the bus and Morgan was perfect until she fell asleep in my arms. When the tour was over, I carried her back to the room, waking her just enough to get her ready for bed. She then slept until 7:00 this morning. She seems to be working on the same pattern today. She is in the room now having a Happy Meal and watching "The Little Mermaid". All is well . . .
Her pain today was about the same as yesterday. She required two doses of dilaudid. The only difference is that this afternoon she has experienced some nausea and vomiting. Once she got that out of her system, she pepped right up.
There has been a change in the schedule for her scans next week. When she was scheduled for Tuesday, it was without sedation. Thank the Lord -- I got wind of this today and was able to make the necessary changes. I do not think Morgan will be still enough for them to complete the scan without sedation and I did not want to risk making a special trip to come back up here only to have the scan be a complete and total failure. As a result, I moved the scan and bone marrow aspirates to Wednesday. This means we will come back up here Tuesday evening and return home on Thursday morning. During much of Morgan's treatment today, I was on the phone with the airline trying to get us rescheduled.
The biggest tragedy of the day is that we have somehow misplaced the program Morgan got on Sunday when we saw Beauty and the Beast. She has carried it around with her since we purchased it and has proudly shown it to everyone who gets within three feet of her. We had it last night when we got off of the bus, but we do not have it now. It is a big mystery. Morgan is upset, but she is taking it much better than I thought she would. We have called in reinforcements to assist in the search effort, and if we come up empty handed I will take the subway back to the theater tomorrow and attempt to purchase another one.
Thanks for the prayers regarding Morgan's cough. It seems to be much better today.
Prayer Requests:
1) Ask for the Lord to allow all of Morgan's upcoming scans and tests to show no evidence of disease. Specifically, ask for those lymph nodes around her liver to be normal and the bone marrow to still be clean.
2) Pray for the Lord to protect all of our travels in the upcoming week.
3) Pray for complete healing for all of the children who are fighting this horrible disease (especially Jake as he undergoes chemo this week).
Fundraiser Info:
There will be a hamburger/hotdog supper and bake sale on August 16 at Pilot Fire Department in Thomasville. It will start around 11:00 am.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
Thanks for following Morgan's progress. We would not have made it this far without all of your love and support. I will do another update tomorrow.
In Him,
Allison
Tuesday, August 5, 2003
Hello Friends,
Another day of treatment is behind us. Only three more until we are able to return to NC. I am so ready to get back. This place seems to be grating on me more than usual.
Treatment today was pretty intense. The pain was pretty bad and Morgan required two doses of dilaudid to control the pain. However, her behavior has been okay since we left the clinic. She is continuing to have a few outbursts, but she is definitely more in control of herself. She wants to go to the park and I want her to take a nap. The RM House is sponsoring a bus tour of the city tonight and we are planning to go. If she does not nap before that trip, she may be out of control and the thought of being with her in that state of mind on a tour bus is not a happy one.
Morgan has a slight cough. Hopefully, it will not turn into anything more serious. Her lungs sound clear, so it is something going on in the upper respiratory system. Thanks to the GMCSF that she takes, her white count is pretty good right now so I am hoping that she can knock this cough out. The lymph nodes around her neck are slighly enlarged and of course this freaks me out. I had the nurse practitioner check it out today and she said it seems to be due to the cough/chest cold. She promised me that she would continue to follow this each day this week. Dr. Kushner came in to talk to me about it too, but Morgan told him that I could not talk so he left. I am thinking that if he was overly concerned he would have ignored the drug-induced demands of a four year old.
Prayer Requests:
1) Ask for the Lord's blessings over Morgan's upcoming CT scan and bone marrow test. These will be one week from today and of course we want them both to reveal no evidence of neuroblastoma in her body.
2) Pray that the Lord rids Morgan's body of this cough and it does not turn into something more serious.
3) Pray for our safe return to NC.
4) Remember the other children with cancer. Please continue to lift Jake in prayer. He had to start yet another round of chemo today. This has been like a sucker punch to his family and they were totally not expecting it. Ask that this round of chemo will rid his body of this disease and all of his healthy cells will be spared.
Fundraiser Info:
There will be a hamburger/hotdog supper and bake sale on August 16 at Pilot Fire Department in Thomasville. It will start around 11:00 am.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I am going back to the room now. I am really hoping to find Morgan asleep so that she can get good and rested for our tour tonight. I will do another update tomorrow after treatment. Thanks for checking in with us and for keeping Morgan in your prayers.
In Him,
Allison
Monday, August 4, 2003
Hello Friends,
We had a terrific weekend. On Saturday, we hopped on a Circle Line Cruise and took a three hour tour around Manhattan. We went with Jake and his mom. Everyone had a great time and the kids behaved like little angels. It was very peaceful just to sit on the boat and look at NY from afar.
The highlight of the weekend was definitely Sunday. Morgan went to her first Broadway play. We saw "Beauty and the Beast". WOW -- it was spectacular. I had concerns about Morgan being able to last through an entire play. However, I do not think she moved a muscle until intermission. The sets and costumes were gorgeous and it moved at a really fast paced. When the final curtain fell and the house lights came up, she looked at me and said, "We will have to do this again tomorrow."
Monday's treatment is behind us and Friday will be here before we know it. Things followed the normal pattern today. Morgan was angry when we left clinic and has been on a rampage ever since. I am able to write this update because I was thrown out of the room. Hopefully, when I go back to the room I will find her asleep. The only thing that helps her is to sleep it off.
Prayer Requests:
1) Morgan will have a CT scan and bone marrow test on Tuesday, please lift her up in prayer each day until then. Ask the Lord to show no evidence of disease in her bone marrow and to show that He has resolved the issues with those lymph nodes around her liver.
2) Pray for our safe travels in the future. We will be flying home on Friday and then turning around and flying back up here Monday night for testing on Tuesday. (Praise the Lord for the AFLAC policy that reimburses us for our travel expenses).
3) Please remember all of the other brave children. Our buddy, Jake, and his family are dealing with some less than wonderful news and they are in a holding pattern right now. This darling boy could use your prayers and support (www.caringbridge.org/nc/hopefor)
Fundraiser Info:
There will be a hamburger/hotdog supper and bake sale on August 16 at Pilot Fire Department in Thomasville. It will start around 11:00 am.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I will do another update after treatment tomorrow. Thanks for all of your love and support and especially your prayers!
In Him,
Allison
Friday, August 1, 2003
Hello Friends,
We are happy to report that the first week of treatment for this cycle is behind us. This means that we are now on the downhill slide and can begin counting the days until we are headed back home to beautiful North Carolina. From what I hear NC has been gloomy and rainy the last few days.
Today's treatment followed the usual pattern. We are still able to manage the pain with only one dose of dilaudid. However, it seems as if her old attitude is back. She was not happy to leave clinic and once again screamed as we made our way along First Avenue. But, I found something that worked. I got down close to Morgan and I said, "I don't think that everyone can hear you. You need to scream louder." I have never been much of an advocate of reverse pyschology, but it actually worked. She was okay until we made it into the room. Then she had a tantrum that lasted about one hour and she finally fell asleep. She is resting now and hopefully will be able to sleep off all of the meds and will be very happy when she wakes up.
We did not make it to the zoo yesterday. Just as we were preparing to go, she fell asleep. She did not wake up until 5:30 so we weren't able to go. However, we took her to a small park that is right across the street from the hospital. She had a great time.
Last night there was a Christmas in July party here at the RM House. Santa was here and Morgan got lots of goodies. It was a wonderful evening. They really know how to take care of us here.
This weekend we are planning on having some fun. Tomorrow we are going to head out with our buddy Jake for some sight seeing. On Sunday, we have tickets to see "Beauty and the Beast". Hopefully, the weather will be beautiful and Morgan will be able to get the break that she needs before we continue treatment on Monday.
Prayer Requests:
1) Pray for the Lord to bless all of Morgan's upcoming tests. Pray for the CT scan to show normal lymph nodes (and everything else too) and for the bone marrow test to show no evidence of disease.
2) Pray that the Lord will bring us home safely from NY one week from today.
3) Remember to pray for the other children. Harrison (www.caringbridge.org/nc/harrison) is heading back to NC for a two week break from treatment. Jake (www.caringbridge.org/nc/hopefor) will start antibodies next week. He had a tough time with pain last time so please remember him.
Fundraiser Info:
There will be a hamburger/hotdog supper and bake sale on August 16 at Pilot Fire Department in Thomasville. It will start around 11:00 am.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I probably will not be doing any updates over the weekend. I will let everyone know how treatment goes on Monday. Thanks for your love and support.
In Him,
Allison
Thursday, July 31, 2003
Hello Friends,
I am sorry that I did not do an update yesterday. The one time I was able to break away and get down to the computer lab, it was closed.
A lot has happened in the last two days. On Tuesday night, a group from the RM House went to see "Finding Nemo". We went even though we had already seen the movie. It was an experience to go to a NY theater. It was two stories and a little more pricey (but the theater donated our tickets and the House paid for snacks). I finally got to watch most of the movie, but Morgan was not as well behaved as the first time we saw it. You may remember that the first time we went Holden kept me from enjoying the show. But it was a wonderful experience.
On Wednesday, I decided to go back to the dilaudid to manage Morgan's pain. The morphine made her itch and her behavior slowly deteriorated throughout the day. Many of you must have been praying for us yesterday and today because the treatments went much better. She is still feeling some pain, but she was able to manage just fine with only one dose of dilaudid. This decrease has really seemed to help in the behavior department. The Lord is always faithful!
We had big plans to go to the zoo with Jake and his mom yesterday (www.caringbridge.org/nc/hopefor). However, just as I got Morgan loaded into her stroller, she got sick to her stomach. We were going to try anyway but by the time I got her out on the street she was green and she finally admitted that she did not feel like going. We are going to try again today.
Well, one year ago today I took Morgan to the emergency room thinking that she had an appendicitis. Little did I know that my life would change forever on that day. I will never forget the words of the resident who broke the news to us. He said, "The CT results are back and she does not have an appendicitis. That is good news. However, she has a mass in her abdomen and the surgeons want to come speak to you". I thought even then that compared to a mass in the abdomen, an appendictis would have been wonderful news. I am happy today that we have made it this far. I could write a book about the power of prayer and how wonderful the Lord has been to us over the past 365 days. But, I am also a little sad today too because 366 days ago we were a normal family. Now we are a cancer family and Morgan has fought so hard over the last year. She is so strong.
Someone gave me a button the other day that says "My Daughter is My Hero". I proudly wear it.
Morgan will have a CT scan on August 12. This will allow the doctors to take another look at what is going on around her liver. She will also have bone marrow tests done on that same day. I think we are going to be able to work it out so that we can spend the weekend (8/8 to 8/11) at home and then fly back for one day of tests.
Prayer Requests:
1) Pray that the Lord will bless Morgan's upcoming CT scan and bone marrow test. Pray that those lymph nodes will now be normal size and that there is no evidence of neuroblastoma in her bone marrow.
2) Ask for the Lord to bless our travels.
3) Remember to pray for the other children who are fighting this monster.
Fundraiser Info:
There will be a hamburger/hotdog supper and bake sale on August 16 at Pilot Fire Department in Thomasville. It will start around 11:00 am.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
Thanks for checking in with us and for all of the love and support that you have shown our family over the last year.
In Him,
Allison
Tuesday, July 29, 2003
Hello Friends,
The second day of treatment is now behind us. Morgan had a pretty rough afternoon yesterday. She was in a terrible state of mind until she finally went to sleep. At 6:30, I woke her up and she was okay until about 10:00 when she announced "lights out" so we all went to bed. She got up this morning eager to head back to clinic again. I am always amazed that she never ever complains about going.
We tried something different today. We used morphine instead of dilaudid to control the pain. The pain was not controlled as well. She was in pain for about 35 minutes (compared to 15 with dilaudid) and she seemed to hurt worse. However, she is not as crazy now. After treatment, she asked to come back to the room and has been fine. Well by fine, I mean that she is still having a few emotional outbursts as opposed to having one very long, gigantic outburst. So now I am trying to decide, is it better for her to have more pain or to be more in control of her emotions. It is agonizing to watch her suffer during treatment but it is also agonizing to watch her be so out of control after treatment. There is never an easy solution.
I spoke with Dr. Kushner today regarding what scans they want to do after this round of treatment. Since her previous CT scan was the only thing that was in question, he is just going to repeat the CT (and maybe do another bone marrow). We are not sure about the scheduling yet, but I have a feeling we will not be coming home on August 8. We will probably have to stick around a few days in order to get the CT performed. The problem is that Morgan has to be sedated for scans because she will not be still. And, the team does not like to mix sedation drugs with the pain relief meds that are given during the 3F8 treatment. Therefore, I do not know when we will be coming home but hopefully these questions will be answered within a day or so.
Prayer Requests:
1) Ask that we get wonderful news from the CT scan. Pray specifically that the lymph nodes around Morgan's liver will no longer be enlarged.
2) Pray that the Lord will protect us while we are away from home.
3) Pray for complete healing for all of the children with this horrible disease.
Fundraiser Info:
There will be a hamburger/hotdog supper and bake sale on August 16 at Pilot Fire Department in Thomasville. It will start around 11:00 am.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
I will be updating the page again tomorrow (provided that Morgan allows me to leave the room. Today I had to wait for the word from her before I was allowed to come down to the computer lab).
Thanks for continuing to follow Morgan's progress and for all of the prayers.
In Him,
Allison
Monday, July 28, 2003
Hello Friends,
We arrived in NY yesterday evening. Morgan was a wonderful little traveler yesterday. She did a terrific job on both legs of the flight and was in a good mood all day long. She really enjoyed having Aunt Becky with us because Becky kept her entertained with stories. After we landed in New York, we had to sit on the plane for an additional hour because there was a potential terrorist on the plane that our gate was supposed to go to. Morgan even did well with this extra time.
Morgan had her first treatment today and things went okay. She behaved a little better than normal, but she is still being a bit difficult. When I left the room, she was sleeping peacefully. However, Becky just brought her down to the computer lab. Morgan was screaming for me so I am going to make this a short update.
The golf tournament for Morgan was a tremendous success. We would like to thank Jerry's co-workers for doing this for us. It means so much to us. There is another benefit on the horizon. This one will be hotdog/hamburger dinner at Pilot Fire Department in Thomasville. It is August 16 at 11:00 am.
Prayer Requests:
1) Ask for the Lord to shrink the lymph nodes around Morgan's liver that were enlarged on her last CT scan.
2) Ask the Lord to keep us safe until we are home again.
3) Please remember the other children with cancer.
I will do another update after Morgan has treatment tomorrow. Hopefully, she will be in a better state of mind and I will be able to include more details.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
Thanks for all of your love and support.
In Him,
Allison
Friday, July 25, 2003 2:35 PM CDT
Hello Friends,
This is just a quick update to announce to everyone that TODAY IS MORGAN'S FOURTH BIRTHDAY!
We are celebrating this evening with a party for grandparents, aunts, uncles, etc. Tomorrow we will be having a celebration with her friends. She is very excited about having two birthday parties. But, we feel like she has gone through so much in the last year that she deserves to have a party every day.
On Sunday, we will depart for NY. I have no idea how I am going to get packed with all of these parties going on. I will do another update after Morgan has her first treatment on Monday.
Prayer Requests:
1) Ask for the Lord to shrink the suspicious lymph nodes around Morgan's liver and for her next set of tests to show no evidence of disease.
2) Pray for our travels to NY to be safe.
3) Remember all of the other children with cancer.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
Thanks for all of the support that you have given our family.
In Him,
Allison
Monday, July 21, 2003 6:12 PM CDT
TUESDAY JULY 22 -- Morgan is HAMA negative -- Praise the Lord! We will be going to NY on Sunday afternoon. This time my aunt Becky will be traveling with us. I do not know where we would be without the help of our family members who are so graciously agreeing to make these trips with us.
Hello Friends,
We had a wonderful weekend. We took the kids to Gatlinburg for a mini vacation. We just wanted to get away and spend some time as a family before Morgan and I leave for NY again. Both of the kids have been through so much in the last year that Jerry and I really want to give them some good experiences over the next year. Hopefully, we will never again have a year as hard as the last year has been on us.
Morgan had her hearing test today. She does have some hearing loss. Mainly, she has difficulty hearing high pitched frequencies. This should not cause any problems with her speech and language development in the future. At this point, she does not require hearing aids. It is unlikely that she will lose any more hearing than she has already lost, but they will continue to follow her for the next year or so. We praise the Lord for this bit of good news.
Prayer Requests:
1) Pray for the Lord's blessings on the upcoming battery of tests that Morgan will have during our next trip to NY. Ask that they reveal no evidence of neuroblastoma in her body. Specifically, ask that the Lord shrink the enlarged lymph nodes around Morgan's liver.
2) Pray that Morgan will be HAMA negative so that we can return to NY as scheduled and she can continue to receive treatment.
3) Remember the other children with neuroblastoma.
Tomorrow we should get the results of Morgan's HAMA test. I will update the page as soon as we hear from Dr. Kushner.
Reminder:
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: GOLF TOURNAMENT
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
Thanks for continuing to follow Morgan's progress and for continuing to lift our family in prayer.
In Him,
Allison
Thursday, July 17, 2003 1:29 PM CDT
Hello Friends,
Finally, a new update! I would have written something sooner but -- Praise the Lord -- there was nothing to report. Our lives have been absolutely normal for the last ten days. It has been wonderful.
I took Morgan to Baptist for blood work today. We were in and out in no time. They only wanted to examine the rash that Morgan has. But, this is a result of the accutane so once I explained that, we were free to leave. We did not even wait around for the results of her blood work. I told them to call if there was anything unusual.
Morgan's blood is now on its way to NY for HAMA testing. I had them go ahead and take an extra vial out at Baptist so I could get it to the UPS store. It will arrive tomorrow. They will run the test on it on Tuesday and we will know for sure if we are headed to NY on the 27th for certain by Tuesday evening.
On Monday, I have to take Morgan back to Baptist for a hearing test. This is normal and should have been done months ago. Many of the chemo drugs she took can cause a hearing loss so they want to check things out. I don't think there is much of a problem -- she hears okay, she just doesn't listen. But, I believe this is a common problem with three (almost four) year olds.
And that is all there is to report. I would apolgize for such a boring update, but that would be a lie. I love boring updates because that it means that our lives are somewhat normal again. In my view, the more boring the better.
Attention:
US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
I have heard that the US post office is considering a pediatric cancer stamp. It is like the breast cancer stamp in that it costs more than $.37, but all proceeds from the sell of this stamp go to fund research for all juvenile cancers. This is greatly needed. If you are in support of this stamp please click on this link and sign the petition: PEDIATRIC CANCER STAMP
Reminder:
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: GOLF TOURNAMENT
Jerry's co-workers are putting this one together and we are deeply appreciative.
Prayer Requests:
1) Ask that the Lord will shrink the enlarged lymph nodes around Morgan's liver so these will no longer be a source of worry to us.
2) Pray that Morgan's blood will be HAMA negative so that she can continue to receive the antibody treatment in NY.
3) Please remember to pray for all of the other childre fighting cancer.
Thanks so much for checking in with us. I will do another update after Morgan has her hearing test on Monday.
In Him,
Allison
Monday, July 7, 2003
Hello Friends!
We had a wonderful weekend. We are loving our family time together. The kids are happy and all is well. The Lord is being good to us.
Morgan's trip to clinic today was brief. Dr. Kushner in New York and Dr. McLean here in Winston communicated and they made the decision to stop giving Morgan pentamadine. Instead, she will take oral antibiotics three days a week. This was a pleasant surprise because hopefully it will cut down on our long clinic days. Dr. McLean seemed pleased with Morgan's progress and we made plans for him to see her again on July 17. This means ten straight days with no medical appointments (Lord willing).
I surprised Dr. McLean today by telling him that Morgan has never had a hearing test. The chemo drugs that she received frequently cause hearing loss. She should have had one, if not more, hearing tests by now. The doctor seemed floored that this had been overlooked. Hopefully, we will be able to get one scheduled for Morgan.
We took the kids to see "Finding Nemo" this afternoon. I learned a lesson today -- Holden is a little young to appreciate a movie in the theater. The parts I saw of this movie were pretty good, but I did have to spent quite a bit of time entertaining Holden in the lobby. Morgan really liked the movie and is already anxious for it to come out on video.
We received an email from Dr. Kushner this afternoon. Morgan had another set of urine tests on our last visit to New York. I am very happy to report that both of these tests came back within normal range again (Praise the Lord). I was kind of concerned about this since she has those mysterious enlarged lymph nodes around her liver.
The only other thing to report is that Holden was running a slight fever tonight. Of course, this gets us on pins and needles for a variety of reasons. Of course, we are concerned about his health. And when a family has a child with cancer, nothing is routine. One of Morgan's earliest symptoms of cancer was a low-grade fever, so whenever Holden gets a fever that always pops into my mind. And, we do not want Morgan to become sick. A simple fever could mean an inpatient stay at the hospital. Maybe he is just working on a new tooth. If he has a fever in the morning, we will be paying the pediatrician a visit.
I mentioned in my last update that the US House of Representatives is considering legislation that would require insurance companies to cover the costs of clinical trials. For more information, use this link: CLINICAL TRIAL ACT
We would appreciate everyone who reads this to ask their representatives and senators to support this legislation. Here is a link to your senators: SENATE
Here is a link to your represenatives: HOUSE OF REPRESENTATIVES
Reminder:
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: GOLF TOURNAMENT
Jerry's co-workers are putting this one together and we are deeply appreciative.
Prayer Requests:
1) Ask the Lord to shrink the lymph nodes around Morgan's liver so that this issue will no longer be a concern to us.
2) Pray that Morgan will be HAMA negative so that she can continue to recieve the 3F8 treatment.
3) Pray that the Lord will grant Morgan a long, cancer-free life so that she will have a wonderful testimony to his glory.
4) Remember all of the other children with this horrible disease. Jake started the antibody treatment today and had a very tough time with the pain. JAKE'S PAGE
I will do another update after our next clinic visit or whenever something happens (which we can hopefully avoid).
Thanks for caring so much about our child.
In Him,
Allison
Friday, July 4, 2003
Hello Friends!
Happy Independence Day! It feels wonderful to be back at home again. Morgan is thrilled and so is Holden. Holden ran up to his sister when he saw her today and gave her a big hug and a kiss. He just looked at me and then walked away to go with Morgan. Oh well, I guess I know my place.
We arrived in Greensboro today at noon. It was a uneventful flight. We went to lunch and then came home. This evening, we went to a cook-out at Grandma and Paw-Paw's compliments of Uncle Mike and Aunt Ruffin. Around 7:30, Morgan climbed into my arms and fell asleep. We brought her home thinking that we would soon be putting her into bed. After all, she had to get up this morning at 4:00 a.m. Well, she must have caught her second wind. Around 9:00, she was bee-bopping around the house so we stuck the kids in the van and drove up to the town square to see the fireworks. They were wearing their pajamas so we figured we would bring them home and put them directly into bed. I was responsible for Holden and he is sleeping soundly now. Morgan, on the other hand, is still dragging out toys as fast as she can and begging to watch videos. I told her she needed to go to bed and she informed me that he daddy said she was not tired. I will let the two of them figure this one out because I am heading into dreamland as soon as I finish typing this update.
Our plan for the rest of the weekend is to just enjoy our time together. On Monday, I will take Morgan to Baptist for blood counts and pentamadine. I will do another update after that. Hopefully, there will be nothing to report before that.
Prayer Requests:
1) Ask the Lord to shrink the lymph nodes around Morgan's liver so they will not continue to be a source of worry to us.
2) Pray that Morgan is HAMA negative so that she can continue to receive the 3F8 treatments.
3) Ask the Lord to rid Morgan's body of this horrible disease.
4) Pray for the other children who are dealing with similar struggles. Sarah has be readmitted to Baptist Hospital with fever. Pray that she will get out quickly. (www.caringbridge.org/nc/sarahsmith).
Reminder:
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: www.phs.wfubmc.edu/special_event.cfm.
Jerry's co-workers are putting this one together and we are deeply appreciative.
Also, a bill is in the works in congress to force insurance companies to cover the cost of clinical trials. This would help us out tremendously since our insurance company is leaving us high and dry when it comes to paying for the 3F8 treatment in New York. Please write your representatives and senators asking them to support this bill. I will post information on this bill after I get it all collected. I know that Taylor's father has put info on this bill on his site so if you would like to take a look at it go to: www.taylorwatts.org.
Thanks for your care and support and I hope you all have a wonderful and blessed holiday weekend!
In Him,
Allison
Thursday, July 3, 2003 1:12 PM CDT
Hello Friends,
I want to start off by saying thank you to everyone out there who prayed for us yesterday. The Lord heard you and today's treatment was a million times better than our experience yesterday. Morgan was calm during treatment, endured the pain like a hero, and was ready and willing to come back to the RM House. I just know that many of you read my entry from yesterday and took it upon your heart to lift us up in prayer. God is good and so are all of you.
Today I requested that Morgan not be given diluadin until absolutely necessary. That seemed to help. She only had to have one dose and was able to keep a level head during her treatment. She did experience pain which is good. This means that she probably does not have HAMA and will be able to come back for a fourth treatment.
Morgan did have a meltdown after we got back to the room. This was caused by the fact that the people at McDonalds put onions and ketchup on her hamburger. I just could not get the bun clean enough to please her and going to the grocery store and gettin regular buns was no good either. She is still crying two hours later and I removed myself from the situation. I thought that McDonalds loved to see you smile -- obviously that is false advertisement.
Our bags are packed and tomorrow will not get here soon enough. We are flying out at 7:30 a.m. and we should get back to Greensboro around noon. I am hoping that we have enough energy to go out and see some fireworks tomorrow night.
Prayer Requests:
1) Ask the Lord to shrink the lymph nodes around her liver and allow everything to be "normal" for her next set of scans.
2) Ask to the Lord to grant Morgan complete and total healing.
3) Ask the Lord to make our return trip to NC safe.
4) Remember to pray for the other children who are fighting this horrible disease. Our buddy Jake will be starting the 3F8 Beta Glucan trial next week (www.caringbridge.org/nc/hopefor).
Reminder:
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: www.phs.wfubmc.edu/special_event.cfm.
Jerry's co-workers are putting this one together and we are deeply appreciative.
I think I will return to the room and assess Morgan's condition. I may even offer to take her back to McDonalds to see if they can get it right this time. Thanks for taking the time to check in with and us and for keeping Morgan and the rest of our family in your thoughts and prayers.
In Him,
Allison
Wednesday, July 2, 2003 10:26 AM CDT
Hello Friends,
Today was, without a doubt, the worst day we have ever had at clinic. It got off to a good start. Morgan's mood was pleasant; she was talkative and friendly. Her meds were running and she had been pretreated with dilaudin and another med for nausea. At 10:00, just as Dora the Explorer came on tv, Morgan got upset because her books were not placed in the correct spot on the bed. I tried to put them in the right spot, but truthfully I had no idea what she was talking about. I tried replacing them several times and each time my efforts failed, and the volume of her voice rose a little higher. Within 10 minutes, she was screaming loudly so I told her that if she did not stop, the tv would be turned off. Well, the tv was turned off and she continued to scream. Then, I started taking her beloved books away from her and she continued to scream. There were moments when she would promise to stop so the tv would come back on and the books would be returned. But, these moments were short-lived and eventually the punishments would have to start again.
I am hoping that no one out there is thinking that I was punishing her for something that she could not control. She was in total control and she was adamant that she would have the last word. I had finally reached my breaking point and was on the verge of tears myself. I told her that if she continued to scream at me, I would leave the room. Well, needless to say I ended up walking out of the room in order to get some composure. When I returned, 3F8 was finished so I told them to unhook her and I brought her back to the room.
This was at 11:00. She screamed for a solid hour. I have no idea if she was in pain today or not. The screaming did not seem to be induced by pain. It was induced by her stubborn streak and a very intense rage. She has been through so much and I have no idea of knowing exactly how she feels. But, as a parent, I am struggling with some things too. There is only so much verbal abuse I can tolerate from an almost four year old. I keep asking myself where Jerry and I went wrong and why my child is having to endure so much punishment. And, the sad fact is that there is a very strong chance that this hell we are putting her through will not stop this disease from returning to her body. We have no guarantees, but we keep moving forward in hopes that someday we will be a normal family again. We both pray everyday that ten years from now we will be able to look back at this treatment and know that it was worth it because it saved Morgan's life. I can not imagine the pain we will feel if things go the other way and we look back on this as being just another bit of torture she had to endure before in inevitable happened.
Tomorrow I am going to request that she be given no pain medicine until it is absolutely necessary. Perhaps easing up on some of the drugs will help her out some. Who knows?
Prayer Requests:
1) Please ask the Lord to shrink the lymph nodes around Morgan's liver so they will not cause us anymore distress when she has her next set of scans.
2) Ask Him to allow her to survive this horrible disease.
3) Ask Him to return us to NC safely on Friday.
4) Remember to pray for the other children who are having the same struggles as Morgan.
Reminder:
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: www.phs.wfubmc.edu/special_event.cfm.
Jerry's co-workers are putting this one together and we are deeply appreciative.
Thanks for all of the love and support. Please continue to cover us in your prayers.
In Him,
Allison
Tuesday, July 1, 2003 11:50 AM CDT
Hello Friends,
Another day of treatment is behind us. Only two more and we will be headed home. There is no treatment on July 4.
Morgan did okay today. The pain is about the same. The biggest difference today is that I told them to unhook her almost as soon as treatment was over. I also made a deal with her that if she would remain quiet she could hang around clinic for a while. Well, Morgan was not able to remain quiet so therefore we left clinic really early. We were back in our room by 11:00. I also put her in time-out until she stopped screaming after we returned to the room. She was in that chair for a long time, but she finally calmed down enough to ask to go to the corner market with me to get her some gatorade. After our return, she had lunch and then told me she was ready to rest. I am hoping that she is now asleep. Today was much better in terms of her behavior.
We finally heard back from the CT scans. It is good news (we think). Dr. Kushner emailed Jerry at home last night. That is a good sign because he normally does not send bad news in an email. That is why my stomach always sinks if I pick up the phone and hear his voice on the other end. Anyway, Dr. Kushner described the reading of the scans to be encouraging. The report said, "There is no clear progression, but she does seem to have mild bil duct dilatation and borderline size nodes in the porta hepatis. Recommend repeat MIBG and or PET scan."
Now what exactly does that mean to all of us who do not have medical degrees? I spoke with Dr. Kushner today and he said that he thinks everything is okay, but they would like to continue to follow this situation. This means that she will have another CT scan, MIBG scan, and bone marrow biopsy after her fourth round of antibodies.
I am not sure if Jerry and I are taking a sigh of relief or still holding our breath to see what the next set of tests hold. But, the bottom line is that Dr. Kushner did use the word "encouraging", so therefore we should be encouraged.
Prayer Requests:
1) Pray that Morgan's next set of tests will show the lymph nodes around the liver to be "normal" in size. This will be on our list for many weeks to come. Jerry and I both believe in the power of specific prayer, so please ask this for us.
2) Pray that this cancer will never overtake Morgan's body again.
3) Pray for our safety as we fly home on Friday.
4) Pray for the other children who are fighting this battle.
Reminder:
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: www.phs.wfubmc.edu/special_event.cfm.
Jerry's co-workers are putting this one together and we are deeply appreciative.
Thank you so much for remembering Morgan in your prayer.
In Him,
Allison
Monday, June 30, 2003 1:10 PM CDT
Hello Friends,
Sorry that I did not do an update on Friday. When I had a chance to get down to the lab, it was closed. Friday's treatment was pretty intense. She had to have three doses of dilaudin instead of her usual two. She also got sick Friday afternoon. This was the first episode of vomiting with this round of treatment.
We had a wonderful weekend. The weather here was absolutely beautiful. It was sunny, but the temperature was perfect. On Saturday, we went out to Long Island and spent the day at the park with Jerry's cousin, Doug, and his family. Once again we want to thank Doug and Kim for opening their home to us and making us feel right at home. You guys are the greatest.
Sunday, we went to Central Park. Morgan rode the carousel three times and then we did another buggy ride. Morgan loves them. We walked into Midtown and took Morgan to FAO Schwartz. She was completely overwhelmed by the gigantic toy store.
Today's treatment was nothing out of the ordinary. Although, Morgan was pitching a major fit about the light in her room being turned on (she wants it off and she can not always get what she wants when she has a roommate). I am not sure at what point the fit stopped and the pain started because today's pain was not nearly as intense as Friday's. Or maybe she was just concentrating on screaming about the light so much that she did not notice that she was hurting.
I still do not know anything about that CT scan. Today, I decided that I was not going to leave clinic until I had a chance to discuss the results with Dr. Kushner. Morgan was peacefully resting as I was waiting. Then, she woke up and started throwing one of her diluadin induced fits and I had to get her out of there before it got ugly. So, needless to say we still do not have the results of the CT scan. I just keep telling myself that if it was a big deal, then someone would be concerned about it. But, it would surely be reassuring for someone to tell me that everything is okay.
I would like to express my sincere thanks to Mary Beth Hylton and Tina Gaines for the benefit they coordinated on Saturday night. Of course, Morgan and I could not attend but Jerry, Holden, and other family members attended and they said that it was wonderful. Thanks to everyone who helped get this event off the ground and to everyone who attended.
Prayer Requests:
1) Please continue to pray about this CT scan. I am praying that when I do tomorrow's update, I will have some news to share.
2) Pray that this treatment will work for Morgan and that cancer cells will never again start growing in her body.
3) Pray for the Lord to bless our travels.
4) Remember to pray for all of the other children with cancer. Taylor started the 3F8 treatment today (www.taylorwatts.org)
Reminder:
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: www.phs.wfubmc.edu/special_event.cfm.
Jerry's co-workers are putting this one together and we are deeply appreciative.
Thanks for the prayers, love, and support.
In Him,
Allison
Thursday, June 26, 2003 11:35 AM CDT
Hello Friends,
Today's treatment was pretty much par for the course; there were no surprises. We have one more day this week and are truly looking forward to the weekend and a little break from clinic. I am going to try to do something fun with Morgan this weekend.
We received word that Sloan-Kettering received Morgan's scans yesterday. This annoys me because they were supposed to be sent the day that we left to go to Florida. That was weeks ago. I am on pins and needles waiting for the final word on these things. They have been submitted for official revieww by the doctors here in NY and we should know something soon. It is so hard knowing that within 24 hours we will be receiving word that everything is okay or that everything is not okay.
This is no way to live. My little girl is not even 4 yet . . . no one deserves everything she has had to endure in the last year. But, the sad fact is that the Ronald McDonald House here (and other ones all over the world) are at full capacity practically 365 days a year. Please count your blessings if you have never had to endure this kind of nightmare.
I spoke with social services yesterday and we have been denied for Medicaid. This was no surprise to us, but we did have to go through the motions of applying in hopes of getting some assistance here at Sloan. However, the Lord is always in control. As soon as I hung up with social services, the phone rang. On the other end was the mother of a little boy who lost his battle to neuroblastoma in October. They have established a foundation in memory of their son and this foundation is offering us some assistance. This is proof positive that the Lord will provide. I have added a link to this foundation at the bottom of the page if you would like to check it out.
Prayer Requests:
1) Please ask for the Lord to bless the results of Morgan's CT scans and to give me the patience to endure the wait on getting the results.
2) Ask Him to bring us back home to NC safely on July 4.
3) Remember in prayer all of the other children who are fighting cancer. And please pray for the families of the children who have lost their battles.
Reminders:
There is another benefit for Morgan on the horizon. Two of my childhood friends are coordinating this one. This will be a night of Southern Gospel Music featuring 3 for 1, Testimony and Rejoice. It is June 28 at 6:00 pm at Pinedale Christian Church. Tickets are $10.00. For more information, contact Mary Beth Hylton at maryhylton@juno.com (Note: this is the correct address, the first time I typed it I got it wrong. Sorry!)
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: www.phs.wfubmc.edu/special_event.cfm.
Jerry's co-workers are putting this one together and we are deeply appreciative.
Thanks for remembering Morgan in your thoughts and prayers!
In Him,
Allison
Wednesday, June 25, 2003 11:31 AM CDT
Hello Friends,
We were able to get in and out of clinic pretty quickly today. We were back in our room at the RM House before noon. Morgan is having one of her typical reactions to all of the drugs that she receives. She threw me out of the room in a fit of rage. Debbie assured me that she had everything under control, so I came down here to type an update and to check my email.
Today seemed to be easier on Morgan than yesterday. It took longer for the pain to start and it did not last as long. In fact, today I thought we would be able to get by with only one dose of dilaudin (pain med). But, she ended up needing the second one just as the 3F8 was being flushed through her system.
Last night, Santa came to the RM House for a Summer Christmas party. Morgan is slowly beginning to socialize again. Her illness and all of the treatment associated with it has made her very withdrawn. I am hoping that she will snap out of that once we put her into preschool. She seemed to enjoy herself in the first few moments of the party. However, she was ready to leave about 15 minutes into the party and I had to convince her to stay until Santa made an appearance. She got a toy that she loves -- an Elmo doll that does a chicken dance.
Also, Morgan had a visit from Taylor and his mom last night (www.taylorwatts.org). Taylor is here for testing hoping to start 3F8 on Monday. Taylor's aunt sent Morgan a Care Bear book and pen and I must say THANK YOU SO MUCH to this wonderful lady. Morgan adores this gift.
I still have not heard anything definite about the CT scan. Dr. Kushner said he would look over it last night. So, either Duke has not sent it (which would not surprise me in the least) or there was nothing to report. If he saw something noteworthy, he would certainly get in touch with us. So, I will keep assuming that "no news is good news" until I hear differently.
Prayer Requests:
1) Pray for the Lord to reveal that this CT scan thing is nothing to worry about.
2) Ask the Lord to protect us as we are away from home.
3) Pray for complete healing for all of the children who are fighting cancer.
Reminders:
There is another benefit for Morgan on the horizon. Two of my childhood friends are coordinating this one. This will be a night of Southern Gospel Music featuring 3 for 1, Testimony and Rejoice. It is June 28 at 6:00 pm at Pinedale Christian Church. Tickets are $10.00. For more information, contact Mary Beth Hylton at maryhylton@juno.com (Note: this is the correct address, the first time I typed it I got it wrong. Sorry!)
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: www.phs.wfubmc.edu/special_event.cfm.
Jerry's co-workers are putting this one together and we are deeply appreciative.
Thanks for all of the care and concern that you show our family and for keeping Morgan in your prayers.
In Him,
Allison
Tuesday, June 24, 2003 1:16 PM CDT
Hello Friends,
Morgan's second treatment for this round of 3F8 is now behind us. Today seemed rougher on her than yesterday. Normally, she takes two doses of pain medications, but today she required three. We had a long day at clinic today because she had to have her pentamadine treatment. This worked out well because she fell asleep and I was able to scoop her up and put her into the stroller without waking her up. This means that we were able to walk up First Avenue without her screaming at the top of her lungs. She is now resting in the room, as she does every afternoon.
I spoke with Dr. Kushner today and still do not have any answers regarding Morgan's CT scan. He could not remember if Duke sent it or not. This is understandable considering how many patients he sees every day. (The man is truly amazing). Anyway, he said he would check Morgan's file and see what he can find out. He does not seem too concerned because he feels like if it was NB, it would have shown up on the MIBG scan. Plus, most relapses do not occur this quickly. Hopefully, we will have this issue settled once and for all tomorrow. Jerry and I have decided that we are finished with Duke. In order to avoid waiting weeks for scan results, we are going to start having all of Morgan's scans done here. Sloan is a very efficient hospital.
Prayer Requests:
1) Continue praying for good news on Morgan's CT scans.
2) Please ask for the Lord to protect our travels.
3) Remember to pray for all of the children who are so bravely fighting cancer.
Reminders:
There is another benefit for Morgan on the horizon. Two of my childhood friends are coordinating this one. This will be a night of Southern Gospel Music featuring 3 for 1, Testimony and Rejoice. It is June 28 at 6:00 pm at Pinedale Christian Church. Tickets are $10.00. For more information, contact Mary Beth Hylton at maryhylton@juno.com (Note: this is the correct address, the first time I typed it I got it wrong. Sorry!)
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: www.phs.wfubmc.edu/special_event.cfm.
Jerry's co-workers are putting this one together and we are deeply appreciative.
Thanks for everything you have done for our family and for keeping Morgan in your thoughts and prayers.
In Him,
Allison
Monday, June 23, 2003 12:28 AM CDT
Hello Friends,
Greeting from New York City. We arrived yesterday evening and Morgan had to have her favorite NY meal as soon as we got settled -- pizza and a hard roll.
We had a very pleasant surprise when we checked in. Someone paid for our loding for the next two weeks. I was a bit confused when they told me that I did not owe any money. "A third party" paid for us. The RM House is $20.00 per night. This is a great rate, but that still adds up after a while. THANK YOU SO MUCH to that mystery person out there with a really kind heart!
I must start by telling everyone what a wonderful experience we had this past weekend. Vacation Bible School was held last week at my parents church, Hopewell Moravian. We received a call Thursday night and they wanted Morgan to be the guest of honor at the grand finale. The VBS children collected money for Morgan's medical expenses all week long and had presents for her on Friday. The kids had a wonderful time. Holden especially liked petting the goats and Morgan liked the hay ride. Jerry and I would like to thank all of our friends at Hopewell for being so kind to us. This was truly a special evening that we will never forget.
Morgan had her first 3F8 treatment today. It was pretty tough on her. She was in a lot of pain, and as you know the pain meds make her very agitated. Agitated is actually an understatement. These medicines make her seem emotionally disturbed. It took her over an hour to finally get settled down today. She had it with me and told me that I had to leave the room and leave her alone. She allowed Debbie to hold her until she finally dozed off. Debbie is very good with children (she works in an elementary school) and I am so happy that she took time out of her summer break to make this trip with us.
We still do not have any definite results of that CT scan. I am thinking that it must not be anything, because they would not have started 3F8 on her if she had masses around her liver. We did not see Dr. Kushner today, which is unusual but I am sure we will have some answers by the end of the week.
If you have not seen our vacation pictures, please check them out. Click on the link to the geocites site at the bottom of this page.
Reminders:
There is another benefit for Morgan on the horizon. Two of my childhood friends are coordinating this one. This will be a night of Southern Gospel Music featuring 3 for 1, Testimony and Rejoice. It is June 28 at 6:00 pm at Pinedale Christian Church. Tickets are $10.00. For more information, contact Mary Beth Hylton at maryhylton@juno.com (Note: this is the correct address, the first time I typed it I got it wrong. Sorry!)
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: www.phs.wfubmc.edu/special_event.cfm.
Jerry's co-workers are putting this one together and we are deeply appreciative.
Prayer Requests:
1) Ask for the Lord's blessing on Morgan's test results. Ask that we will soon receive word that the CT scan is nothing to worry about.
2) Pray for the Lord to protect us while we are away from home.
3) Please remember all of the other children and their battles. Harrison started a new treatment today in hopes of ridding his body of this disease. It uses arsenic to treat the cancer. Please pray that this will cure him and there will be no harmful side effects of the treatment (www.caringbridge.org/nc/harrison)
Thanks for all of you love, support, and most of all your prayers.
In Him,
Allison
Tuesday, June 17, 2003 7:20 PM CDT
***There are new pictures of our trip posted. Click on geocities link at the bottom of the page to see them. ***
***I just put some new pictures in the photo album. There will be more pictures of Morgan's Wish Trip posted soon***
Hello Friends,
Our trip to Florida was fantastic. Morgan had a wonderful time and so did the rest of us. It was very very hot. But we still managed to have a terrific time. The highlight of Morgan’s trip was meeting Ariel, the little mermaid. Morgan was treated like a princess and we want to express our most sincere gratitude to Make a Wish, Give Kids the World, and everyone else who helped to make this a dream vacation.
We got home around midnight last night. Morgan was not quite ready for her Disney experience to end. She stayed up until 3 am watching the Lion King and other Disney favorites. That made it a bit difficult to roll her out of bed this morning to go to clinic.
Now what is going on with Morgan medically? I called Dr. Driscoll after we got to Florida. Her bone scan was excellent. But, since the Barnes family never gets an “everything is wonderful” report, the CT scan proved to be the kicker. It seems as if some spots are showing up around her liver. According to Dr. Driscoll, they could be lymph nodes that have been there all along. But, he needs to compare these scans with her previous scans. Duke sent all of Morgan’s scans to Sloan-Kettering. Dr. Driscoll is supposed to be sending her new scans to New York so the two sets can be compared. Meanwhile, it is a week later and we still do not have any answers regarding these mysterious spots. It is so hard waiting on things like this. I feel like I am always waiting on some type of report or test to come back. Will life ever be normal again? I am afraid that the answer to that question is a big fat NO!
I had to take Morgan to Baptist for counts today. We were in and out of there in less than an hour. We saw Dr. Chauvenet and he did offer me some comfort. I was talking to him about Morgan’s CT scan and he said that we all have lymph nodes in our bellies and this is probably all that was showing up. I realize that he has not even seen the scans, but it still made me feel somewhat better. Plus the fact that I just keep praying for the Lord to cover us all with his grace and mercy – maybe somehow I can keep my sanity.
Dr. Kushner emailed us tonight and told us that Morgan is HAMA negative. This is good news – Thank You Lord! This means that we will be heading back to New York to begin treatment on June 23. This time, Jerry’s aunt Debbie is making the journey with us. We are so fortunate to have such a supportive extended family. I am not sure how we could have made it this far without the love and support of so many friends and family.
Prayer Requests:
1) Pray that the Lord will bless Morgan’s most recent test results. Please ask that He reveal to all of us that only lymph nodes are showing up on these scans.
2) Pray for the Lord to protect us in our travels to New York.
3) Pray for the Lord to grant complete and total healing to Morgan and allow her to live and long and healthy life.
4) Remember to pray for all of the other children who are fighting so hard to beat this terrible disease.
Reminder:
There is another benefit for Morgan on the horizon. Two of my childhood friends are coordinating this one. This will be a night of Southern Gospel Music featuring 3 for 1, Testimony and Rejoice. It is June 28 at 6:00 pm at Pinedale Christian Church. Tickets are $10.00. For more information, contact Mary Beth Hylton at maryhylton@juno.com (Note: this is the correct address, the first time I typed it I got it wrong. Sorry!)
Attention all golfers: a golf tournament is going to be held to benefit Morgan. It is Friday, July 25 at 1:00 (lunch and registration begin at 12:00). It is at Reynolds Park Golf Course and the cost is $75.00 per golfer. This includes golf and cart fees, a boxed lunch, a sleeve of golf balls, range balls and prizes. It is a four person captian's choice played from the white tees. For more info go to: www.phs.wfubmc.edu/special_event.cfm.
Jerry's co-workers are putting this one together and we are deeply appreciative.
Thanks for checking in with us and keeping us in your thoughts and prayers.
In Him,
Allison
Tuesday, June 10, 2003 7:03 PM CDT
Hello Friends,
Life around the Barnes house still has not slowed down one bit. We are as busy as ever, but we have many reasons to praise the Lord!
The spaghetti supper on Saturday was a huge success. This will help us out so much. Jerry and I want to thank our friends at River Oaks Community Church for working so hard for us. We love you all! Morgan was able to attend the dinner and I think she had a very good time. It was her first real social outing since before her bone marrow transplant. It was so good to be there, and to see all of our dear friends who are showing us their love and support.
Sunday was an exciting day for us. The four of us attended church together for the first time since Morgan was diagnosed with cancer. It felt so good to be sitting there beside of Jerry and Morgan knowing that Holden was in the nursery playing with all of his friends. Life is slowly returning to normal and we praise the Lord for bringing us through so many difficult times.
Monday, I took Morgan to Baptist for blood counts and pentamadine. Her blood counts are pretty good. Her hemoglobin is still a bit low, but it was higher that last week so this is a good sign. The white count and platelets are great.
Today Morgan and I went to Duke for a CT scan and bone scan. This was an ALL DAY affair. But, it is over now and hopefully we will not have any more business to conduct at Duke for the next three months. We did not get the results of these scans today. Dr. Driscoll sent word to us that he would call us after we return home from Florida with all of the test results. Of course, I am paranoid now. I am wondering if he saw something bad and does not want to ruin our trip by giving us bad news on the eve of our departure. Jerry and I have decided to contact him tomorrow, not knowing something like this is a terrible feeling.
Morgan is doing well with her accutane. She takes the pills like a champion. We want to express our appreciation to the Cain family. Months ago, they told us that they trained Grace to take these hard to swallow pills. We did the same thing and it was so worth it. She has no trouble at all getting them down. This is pretty good for an almost four year old because one of the pills is rather large. We thank the Cains so much for this and all of the other wonderful advice that they have given us over the last ten months.
The limo will be here tomorrow morning at 6:00 to take us to the airport. We are all very excited about our trip. I am just thankful for the opportunity. Morgan really deserves this trip.
Prayer Requests:
1) Pray that the Lord will bless Morgan's two most recent scans and they will also come back showing no evidence of disease.
2) Pray that Morgan's HAMA test will come back negative so that she can have another round of 3F8. I drew her blood this morning and it is now in route to NYC.
3) Pray for the Lord's blessings on our travels.
4) Remember to pray for all of the children with neuroblastoma and other types of childhood cancer.
Reminder:
There is another benefit for Morgan on the horizon. Two of my childhood friends are coordinating this one. This will be a night of Southern Gospel Music featuring 3 for 1, Testimony and Rejoice. It is June 28 at 6:00 pm at Pinedale Christian Church. Tickets are $10.00. For more information, contact Mary Beth Hylton at maryhylton@juno.com (Note: this is the correct address, the first time I typed it I got it wrong. Sorry!)
I will do another update after we return home from Florida. Thanks so much for the love and support that you show our family.
In Him,
Allison
Wednesday, June 4, 2003 5:52 PM CDT
THURSDAY JUNE 5 -- Morgan had her MIBG scan today and they just called with the results. According to the nurse practitioner, they looked FANTASTIC! Praise the Lord. He is good -- all the time!
Hello Friends,
I would like to be telling you that the Barnes family is having a relaxing time at home. BUT, the truth is things are just as hectic as ever.
On Saturday (after I typed the update) Holden was still feeling puny so Jerry took him to the doctor. He has a virus. In terms of Holden’s health, this is nothing serious. Just one of those childhood viruses that lasts for a day or so and then disappears. However, we had to keep Holden and Morgan separated in hopes that she will not contract the virus. As you know, if she gets a fever it means a trip to the hospital. We are just saying a lot of prayers that she will stay well and be able to go to Florida next week.
On Tuesday, Jerry and I made a trip to Social Services to apply for Medicaid and Social Security for Morgan. We were rejected for Social Security benefits on the spot. We still need to mail in our Medicaid application so it will probably be 45 days or so before we get rejected for that. This was no surprise to us, but the financial counselor at Sloan said that we need to have proof of application for these services before they can offer internal assistance to us.
When I got home on Tuesday, Morgan was complaining that it hurt to pee-pee. She managed to go the entire day without urinating. Of course, I was panicking by 3:30. I called the team at Wake and they said that I could either bring her in to the emergency room or take her to her regular pediatrician. That was a simple choice. I took her to Health Care and the whole way there I am begging her to pee because I knew that a catheter would be in her future. Needless to say, she decided to go the route of the catheter and that was no fun at all. She did not have a urinary tract infection or anything. The best we can tell is that something down there was irritating her and after holding it for a long period of time, she could not go. Everything is fine today, but that was really a major scare for me.
I was able to reschedule Morgan’s MIBG injection for earlier today. Morgan, Paw-Paw and I drove to Durham last night so we could be there at 8:00 for the injection. This is the only way we could avoid having to reschedule the scan that is planned for tomorrow. Morgan got the injection by 8:30 and we were home before 11:00.
Morgan’s line removal was scheduled for 3:00 pm today. She could not eat the whole day and she was not in good spirits at all. It is very difficult explaining to a young child why you cannot feed her. I finally just had to put her in the van and drive her around. She thought we were on our way to the hospital so she stopped complaining.
The line removal was a very easy process. Jerry and I stayed in the room with her. The most difficult part was the sedation. She woke up crazy and very hungry. She is sitting here with me now having a hotdog, french fries and Sprite. We are thrilled that this line is out and we feel certain that she will have a much better time in Florida without having to worry about that thing.
We emailed Dr. Kushner today to see if Morgan’s bone marrow results are in. They are and there was NO EVIDENCE OF NEUROBLASTOMA in the sample. The Lord continues to take care of Morgan and the rest of us. Of course, we are thrilled once again. She will start taking accutane tomorrow. Many of you know this drug to be used for acne in teens and adults. It was also discovered that this drug significantly reduces the chance of neuroblastoma relapsing. This drug is known to cause mood swings, so life at our house should be very exciting for the next two weeks. She will take it for two week cycles and then take at least two weeks off for six months.
Dr. Kushner also sent us the results of her urine tests that detect neuroblastoma. They both came back within normal range. She had these same tests before she started the antibody treatment. Both of the numbers were elevated prior to beginning 3F8. We are so happy that the Lord led us to Sloan Kettering and the wonderful doctors up there.
Tomorrow it is back to Durham for the MIBG scan. We are looking forward to a day off from the medical world on Friday.
Prayer Requests:
1) Pray that all of Morgan’s upcoming tests and scans will be blessed by the Lord. May they all show that there is no neuroblastoma anywhere in her body.
2) Pray that she will be HAMA negative so that she can continue to receive the antibody treatment.
3) Pray that Morgan will stay healthy so she can get to go to Disney next week. She surely deserves this trip after all she has been through.
4) Pray for all of the other children with cancer. I found out yesterday that a teenager, Tyler, who was on the unit at Duke with Morgan passed away. Please keep his family in your prayers (www.caringbridge.org/nc/bigthorton).
Reminders:
My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net)
There is another benefit for Morgan on the horizon. Two of my childhood friends are coordinating this one. This will be a night of Southern Gospel Music featuring 3 for 1, Testimony and Rejoice. It is June 28 at 6:00 pm at Pinedale Christian Church. Tickets are $10.00. For more information, contact Mary Beth Hylton at maryhylton@juno.com (Note: this is the correct address, the first time I typed it I got it wrong. Sorry!)
As always, thanks for supporting our family. Most importantly, thank you for all of the prayers. We feel as if the Lord is performing miracles in Morgan’s body. I will do another update after we have the results of Morgan’s MIBG scan.
In Him,
Allison
Saturday, May 31, 2003 8:23 AM CDT
Hello Friends,
Greeting from North Carolina. Our flight touched down in Greensboro a few minutes after 10:00 last night. Uncle Wallace picked us up at the airport and Morgan almost fell asleep on the ride. However, as soon as we pulled into our driveway and she spotted her daddy she got her second wind. She was still away when I went to sleep after midnight.
Morgan had a long day at clinic yesterday. We arrived at 7:30 am. We were told that she was going to be the first one having bone marrow samples taken. However, she was not. But, she handled it very well considering that she was starving and not allowed to eat. The bone marrow test was completed around 10:00 and then we immediately started 3F8. We were out of there by 1:00 and went to the RM House to get our stuff to head to the airport. We wanted to get an earlier flight, but it did not work out for us.
Holden looks like he has grown three inches in the last two weeks. When I got home last night, Jerry told me he had a fever. Great! He seems to be feeling fine this morning so I am watching him closely hoping that we can avoid a trip to the doctor. I want a break from the medical scene for a few days.
Yesterday, we received notification that our insurance WILL NOT cover any of the treatment in New York. The bill for our first two visits was just over $23,000 (not including the trip we just returned home from). The financial counselor from Sloan called us last night with some advice on what to do next. She suggested that we apply for Medicaid and social security benefits for Morgan. Even if we get denied, the fact that we have applied will allow Sloan to write off some of the charges. Also, she suggested that we appeal the insurance company’s decision. Medcost, our insurance, does not cover any clinical trials and this treatment is considered a clinical trial, even though they have been doing it for 15 years and have had very good results. I am holding to the fact that it is just money and the Lord will provide.
I have also received word from Duke about Morgan’s 100 Day Post Transplant Studies. This frustrates me a bit because I called them and told them that she would not be available on June 4 because she is having her central line removed. And of course, they scheduled her for an MIBG injection on June 4 at 2:00. She is having the line removed at 3:00. More hassles . . .
It will take me another three weeks to get our affairs in order (Duke, Medicaid, etc). And then it will be time to return back to New York. I am really looking forward to when we will have an eight week break between treatments.
Prayer Requests:
1) Pray that Morgan’s bone marrow test and urine test that she had in New York will both come back showing no evidence of disease.
2) Pray for the Lord’s direction in how to deal with the financial issues that are a direct result of Morgan’s illness.
3) Pray for the other children fighting the battle against neuroblastoma.
Reminders:
My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net)
There is another benefit for Morgan on the horizon. Two of my childhood friends are coordinating this one. This will be a night of Southern Gospel Music featuring 3 for 1, Testimony and Rejoice. It is June 28 at 6:00 pm at Pinedale Christian Church. Tickets are $10.00. For more information, contact Mary Beth Hylton at maryhylton@juno.com (Note: this is the correct address, the first time I typed it I got it wrong. Sorry!)
Thanks for your continued prayers for Morgan. I will do another update as soon as I get the results of Morgan’s bone marrow and urine tests.
In Him,
Allison
Thursday, May 29, 2003 12:23 AM CDT
Hello Friends,
Sorry for not doing an update yesterday. There was really not much going on except for the usual treatment, pain, etc. I guess the biggest change about yesterday was that after treatment was finished, Morgan looked at me and told me that she was ready to leave the clinic. I guess there is a first time for everything. The pain did not really seems as intense yesterday.
Today it took longer for the pain to arrive, but it hit her pretty hard when it arrived. She was in no mood to leave clinic today either. She yelled at me for over an hour after we got back to the Ronald McDonald House. She finally drifted off to sleep, allowing me to come down and type an update.
We are now counting down the hours until we board the plane. I am really looking forward to sleeping in my own bed again. Our plane will depart NYC at 6:05 pm. This should give Morgan plenty of time to get rested after treatment and be in a good mood for the flight. Even if she is not, we will grin and bare it because we are so ready to get home.
The plan for tomorrow is to arrive at clinic around 7:30 am. Sometime between 8:30 and 9:30, Morgan's bone marrow procedure will be performed. If you think about it, please say a prayer for her tomorrow Morgan asking the Lord to reveal that her bone marrow is totally free from disease. The 3F8 treatment will follow the bone marrow procedure and then we will be released.
Prayer Requests:
1) Please ask the Lord for Morgan's urine test to come back within the normal range. We should be getting those results the sometime tomorrow. The last time she had this done, the numbers were slightly elevated and then we found out a few days later that her bone marrow still had neuroblastoma cells in it.
2) Pray that Morgan's bone marrow shows no evidence of disease.
3) Pray for the Lord to bring us back home to North Carolina safely.
Please look for the next update on Saturday. I will let everyone know that we have arrived home. Thanks for checking in with us and for carrying us with your prayers.
(Reminder: My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net)
There is another benefit for Morgan on the horizon. Two of my childhood friends are coordinating this one. This will be a night of Southern Gospel Music featuring 3 for 1, Testimony and Rejoice. It is June 28 at 6:00 pm at Pinedale Christian Church. Tickets are $10.00. For more information, contact Mary Beth Hylton at maryhylton@juno.com (Note: this is the correct address, the first time I typed it I got it wrong. Sorry!)
In Him,
Allison
Tuesday, May 27, 2003 2:32 PM CDT
Hello Friends,
I hope that you all had a wonderful Memorial Day! I heard that the weather in NC was glorious yesterday. The weather here in NYC was not so glorious, but that is okay. We are now on the downhill slide and will be heading down south in just a few more days.
On Saturday, we took Morgan to one of her favorite NYC spots. There is a little place up the street from the RM House where you can paint a piece of pottery. This is a great place to spend a rainy afternoon. She worked on painting a heart for over an hour. Then, we took her to a little toy store where she acquired a new Care Bear and picked out two toys for her brother. One of which was a new Thomas video which she insisted on "previewing" for him. Isn't she a thoughtful big sister?
On Sunday, we took Morgan out for her first adventure on the subway. We rode the 6 train to Grand Central Station and then took the shuttle to Times Square. Morgan finally got to ride the ferris wheel at the Toys R Us in Times Square. She loved it. She was not even afraid of the giant dinosaur that is visible when you get towards the top. She managed to talk me into buying her a new Care Bear and then she was ready to come back to the Ronald McDonald House.
We had Monday off from the clinic to celebrate Memorial Day. We were not able to celebrate. The weather was terrible and I did not ever think the rain was going to stop. Plus, per doctors orders we had to collect Morgan's urine for the entire day. Thus, do I really need to elaborate on why we were not able to venture out of the room? Neuroblastoma can be detected in the urine. She should have those test results by the end of the week.
Morgan had a treatment today. It was a long day at clinic. The day was typical. She experienced some pain, then screamed when we drug her out of the clinic. And now she is asleep in the room. Tomorrow we will go back and do it again.
Prayer Requests:
1) Pray for the Lord to bless Morgan's bone marrow tests on Friday. Ask Him to reveal to us that there is no evidence of neuroblastoma in Morgan's bone marrow.
2) Pray for our safe return to NC.
3) Pray for the other children who are fighting this disease. I just found out today that Taylor has had a post-transplant bone marrow biopsy come back positive. Morgan had this happen to and it is a very tough pill to swallow. (www.taylorwatts.org)
(Reminder: My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net)
Thanks for checking in with us and for continually praying for Morgan. I will do another update tomorrow after her treatment.
In Him,
Allison
Friday, May 23, 2003 1:44 PM CDT
Hello Friends,
Our first week of antibodies for this cycle is behind us. Morgan handled treatment just fine today. Today was like all of the rest, pain and discomfort and then extreme fatigue. She is now taking her afternoon nap. Today will probably continue following the usual pattern. She will wake up around 5:00, eat some pizza, play for a while, eat supper, and go to bed around 9:00.
Last night, Morgan told me she was ready to go back to Lewisville. It breaks my heart that I have to tell her no. However, at least now we are on the downhill slide. We are leaving NY next Friday (God willing).
We are going to try to get out and do something fun this weekend. Morgan keeps telling me that she NEEDS some more Care Bears. Morgan never wants anything. If there is something she desires, she NEEDS it. Maybe we will be able to get out and do a little toy shopping.
The weather here is still pretty yucky. It is almost June and I am tired of being cold. It is not much nicer in NC, so at least I am not missing out on the sunshine.
Prayer Requests:
1) Pray that Morgan's bone marrow tests on May 30 will show no evidence of neuroblastoma.
2) Pray for the Lord's protection on us as we are away from home.
3) Pray for all of the children who are fighting this horrible disease.
I will do another update on Tuesday after her next treatment. I hope you all have a wonderful holiday weekend! Thanks so much for continuing to lift Morgan up in prayer.
(Reminder: My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net)
In Him,
Allison
Thursday, May 22, 2003 1:51 PM CDT
Hello Friends,
It is still raining here in New York City. Man, am I longing for some sunshine. They are still calling for rain through the holiday weekend and I am beginning to wonder what we will do to entertain ourselves -- maybe we should build an ark?
Morgan had a pretty good day today. The pain did not seem to be as intense today and there was no vomiting. However, she pitched her usual fit when it came time to leave the clinic. We walked five blocks on the streets of New York with her screaming every step of the way. You get the strangest looks when you are walking with a child screaming at the top of her lungs!
After we returned to the room, Morgan went to sleep (or so I thought). I decided that it would be a good time to wash the blue blanket -- wrong decision. As soon as the blanket left the room she woke up asking for it. Marty finally got her under control by taking her to the laundry room and waiting for it to go through the wash and the dry cycles. Hats off to Marty for her patience.
Today was a pretty productive day. I called the doctors at Wake Forest to discuss removing Morgan from her TPN. She is eating well now and weighs about 36.8 pounds. We decided to taper her off for the next six nights and then take her off. We are pleased about this. Then, I called the doctors at Duke to let them know what is going on and ask permission to remove her central line. The doctors at Sloan and at Wake already said it was okay to do this so I felt like I needed Duke's input too. Duke agreed. I made an appointment for Morgan's line to be removed on June 4. We are thrilled because it will be out before our trip to Disney. This means that she can swim, take baths, and be a little closer to normal.
Duke is also in the process of scheduling her 100 Day Post-Transplant studies. Time goes by so fast. Her 100th day will be May 31. I should get a schedule for these tests tomorrow. I told Duke that it was okay for them to do the scans and such, but I want them to be sure to send the results to Dr. Kushner in New York to have them read. I will feel pretty confident about the results if I know that two different teams of physicians are reading the results.
Prayer Requests:
1) Pray that Morgan's bone marrow tests on May 30 will show no evidence of neuroblastoma.
2) Pray for the Lord's protection over us while we travel.
3) Pray for the other children with neuroblastoma.
I will do another update tomorrow. Thanks for checking in with us and especially for praying for Morgan's complete recovery.
(Reminder: My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net)
In Him,
Allison
Wednesday, May 21, 2003 1:12 PM CDT
Hello Friends,
Yesterday, Morgan woke up around 5:00. The weather was beautiful so we took her for a walk in Central Park. It was fantastic. As we were heading out of the park, we met another neuroblastoma family being treated at Sloan. Their son, Bryce, is starting his bone marrow transplant today. Please keep Bryce in your prayers.
Today's treatment pretty much followed the normal pattern. She experienced some intense pain for about 15 minutes and then she rested. I must say that it was easier getting her to leave clinic today. She did not scream and cry like she did yesterday. As soon as we got back to our room here at Ronald McDonald, she threw up. She is now up in the room resting.
The child life department sponsored a Prom for all of the patients today. Morgan did not get to go because it was in the middle of her treatment time. However, she did get a beautiful dress out of it. I plan on putting her in it when she is able to return to church for the first time.
I am glad that we were able to get out and do something yesterday because it is raining today. The weather forecast is calling for rain through the Memorial Day Weekend. We will probably have serious cases of cabin fever by the time we are able to get out again to do something.
Prayer Requests:
1) Pray that Morgan's bone marrow biopsies on May 30 will show no evidence of disease.
2) Pray for the Lord's protection as we are away from home.
3) Pray for the other children with neuroblastoma. Another child, Zoe, is dealing with some unfavorable test results. Please pray specifically for Zoe and her family (www.caringbridge.org/il/zoejowolsfeld)
(Reminder: My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net)
I am truly amazed that I have been able to do updates for three days in a row. I will try again tomorrow. Thanks for thinking of our family and keeping Morgan in your prayers.
In Him,
Allison
Wednesday, May 21, 2003 1:12 PM CDT
Hello Friends,
Yesterday, Morgan woke up around 5:00. The weather was beautiful so we took her for a walk in Central Park. It was fantastic. As we were heading out of the park, we met another neuroblastoma family being treated at Sloan. Their son, Bryce, is starting his bone marrow transplant today. Please keep Bryce in your prayers.
Today's treatment pretty much followed the normal pattern. She experienced some intense pain for about 15 minutes and then she rested. I must say that it was easier getting her to leave clinic today. She did not scream and cry like she did yesterday. As soon as we got back to our room here at Ronald McDonald, she threw up. She is now up in the room resting.
The child life department sponsored a Prom for all of the patients today. Morgan did not get to go because it was in the middle of her treatment time. However, she did get a beautiful dress out of it. I plan on putting her in it when she is able to return to church for the first time.
I am glad that we were able to get out and do something yesterday because it is raining today. The weather forecast is calling for rain through the Memorial Day Weekend. We will probably have serious cases of cabin fever by the time we are able to get out again to do something.
Prayer Requests:
1) Pray that Morgan's bone marrow biopsies on May 30 will show no evidence of disease.
2) Pray for the Lord's protection as we are away from home.
3) Pray for the other children with neuroblastoma. Another child, Zoe, is dealing with some unfavorable test results. Please pray specifically for Zoe and her family (www.caringbridge.org/il/zoejowolsfeld)
(Reminder: My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net)
I am truly amazed that I have been able to do updates for three days in a row. I will try again tomorrow. Thanks for thinking of our family and keeping Morgan in your prayers.
In Him,
Allison
Tuesday, May 20, 2003 12:55 AM CDT
Hello Friends,
(Reminder: My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net)
Another day of this cycle of antibodies is behind us. Morgan still had to endure another day of intense pain. Today's seemed a little bit longer than yesterday's. She did not have to deal with the vomiting (or I should say that she has not vomited yet).
She has been in a pretty bad mood today, but with all she has had to endure, that is understandable. She did not fall asleep while we were in clinic and she kept instructing me that I could not talk to anyone and I had to rub her back. Finally, she reached the point of melt-down and I decided that it would be best to bring her back to the Ronald McDonald House where she could pitch her fit without disturbing all of the other patients. She was not happy with my decision. She screamed all the way back and for another half and hour after we got here. She finally crashed on the bed and is now upstairs resting -- although she does wake up every so often and informs me that she wants to go back to her bed at the clinic.
Morgan's appetite has really improved. Yesterday she ate like I have never seen her eat before. I was really impressed by the amount of food that she was able to put away. She continued eating today until the antibody treatment started. Today when she was weighed, she was over 35 pounds. Without a doubt, this is the most she has ever weighed in her life.
Our plans for the rest of the day are to allow Morgan to relax and then see what she feels like doing when she wakes up. The weather is beautiful today, but it is supposed to start raining today and not stop until after Memorial Day. Hopefully, we will be able to get out and do some stuff today, since it may be our last nice day for awhile.
Prayer Requests:
1) Morgan will have her bone marrow tested again next Friday. Please pray that these tests also come back showing No Evidence of Disease.
2) Pray that the Lord will grant Morgan a long and healthy life and permit her to have a wonderful testimony to His glory.
3) Pray for our safe return to North Carolina.
4) Please lift up all of the children who are fighting neuroblastoma.
This has been two days in a row that the computer lab has actually been open when I came down to do an update. Hopefully, we can set a record and I will be able to do another update tomorrow.
Thanks for stopping by and remembering Morgan in your prayers. God is good -- All the time!
In Him,
Allison
Monday, May 19, 2003 2:17 PM CDT
Hello Friends,
(Reminder: My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net)
Morgan, Marty and I arrived in New York around 5:00 yesterday afternoon. We checked into our room at the Ronald McDonald House by 6:00. Our room is pretty big and so far everything has been great.
It was with many tears that Morgan and I boarded the plane yesterday. It is hard to be away from Jerry and Holden. I called mom today to check on Holden and she said that he is rather clingy. I guess that is to be expected since he is adjusting to life without mommy and sissy.
In a way, it is nice to be back here with all of the families that we have so much in common with. We are sharing a room in the day hospital with Harrison and our friend Jonathan from Canada is right across the hall. Carl is here getting radiation after finishing his first round of antibodies last week. This is kind of like a club that no one wants to be in, but once you join you get all kinds of support.
Morgan's first round for this cycle of antibodies went okay. She had some pretty intense pain for about 10 minutes. She finally got comfortable and then she threw up. After that she rested. She is now up in the room continuing her rest. I will probably try to wake her up when I get back to the room because I do not want her to stay awake all night long.
Everything seems to be on go for Morgan to start preschool in the fall. She had to undergo a screening process, which kind of made me nervous. I was kind of worried that she had missed out on a lot over the last year. However, she did very well and the teacher even said she was above average. I know she is my child, but I am very proud of her. She is so remarkable. She has gone through so much, yet she seems to still be thriving.
Marty is helping me out so much here. I am glad I have so much support. The Lord has blessed me beyond measure.
Prayer Requests:
1) Please pray for the Lord to use this treatment to rid Morgan of the horrible disease forever.
2) Pray for the Lord to protect us while we are away from home and bring us back safely to North Carolina.
3) Please remember to pray for the other children with neuroblastoma. Sarah and Cam are both dealing with some less than favorable test results (www.caringbridge.com/nc/sarahsmith and www.caringbridge.com/fl/camspage). And Jake is still waiting for news about what he needs to do next regarding treatment (www.caringbridge.com/nc/hopefor)
I am going to TRY to do another update tomorrow. Thanks for stopping by and please continue to keep Morgan in your prayers. God is good -- All the time!
In Him,
Allison
Tuesday, May 13, 2003 8:19 PM CDT
Hello Friends,
(Reminder: My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net)
I received an email from Dr. Kushner tonight so I am able to do an early update. Morgan is HAMA negative. This is another answer to prayer. Thank you Jesus! This means that everything will proceed as scheduled. Tomorrow morning, I will give Morgan a GM-CSF shot. She gets one everyday throughout treatment. We are not looking forward to this, but we know that it is a necessary evil. On Sunday, we will travel to New York to begin treatment on Monday. My mom’s sister, Marty, will be traveling with us this time. I am so fortunate that we have plenty of aunts who are willing to make this trip with us. Two weeks is along time to be away from home. Marty, Becky (my mom’s other sister), and Debbie (Jerry’s aunt), have all agreed to take a turn and go with us. Not to mention the fact that my parents are going to be making the trip many times too. (I am still trying to convince Grandma Penny that getting on a plane is a safe thing to do). This trip would be very difficult without some support and I am very very appreciative.
Today was the last day of radiation. Morgan handled it in normal fashion. She was so pleasant while they were putting her out and so NOT pleasant while she was waking up. But, today we did not have a clinic visit so I was able to scoop her up and bring her home.
Morgan’s appetite is really beginning to pick up. However, the decision was made to leave her on TPN a little while longer. She lost a pound over the weekend so the doctor did not feel comfortable taking her off just yet.
I do have something good to report. We are starting to make plans for when our lives will be somewhat normal. I am taking Morgan tomorrow to sign her up for pre-school. Most of you know that I was a working mother before Morgan was diagnosed with cancer. I will not be returning to work next school year (and I will miss my friends at North Stoke High School tremendously). Morgan needs to stay busy in order to insure that she is ready to start kindergarten. In other words, she need more than a steady dose of me all day. We are planning to enroll her in Calvary Baptist Preschool next year. This is a three day a week program for four hours each day. We also made the decision to have her assessed by the Forsyth County Schools to make sure there are no developmental delays caused by her illness and all of the drugs she has received. If by chance there are problems, she may enroll in pre-kindergarten in the local schools.
Prayer Requests:
1) Pray for the Lord to protect us in our travels.
2) Pray for the Lord to never allow Morgan’s cancer to return.
3) Pray for all of the children with neuroblastoma.
Thanks for praying for us. I know that it is working. God is good – ALL THE TIME!
I am not sure when I will do another update. I know that we are going to try to live the next few days with no medical intervention whatsoever. Therefore, there may not be anything new to report until we get to New York (and I hope this is the case).
In Him,
Allison
Monday, May 12, 2003 4:18 PM CDT
Hello Friends,
Today was a long day at clinic. We arrived at 7:30 and they immediately started Morgan’s radiation treatment. Tomorrow will be her last one and that certainly makes us happy. After Morgan was sedated, I walked up to the clinic to drop off her blood. However, no one was there yet. I knew that I would need to be back downstairs before Morgan woke up so I could not wait. Therefore, this slowed things a bit.
Morgan woke up from sedation very very angry. Today was by far the worst day so far. As soon as she woke up, I put her in the stroller to take her upstairs for our clinic visit. She screamed every step of the way. Her screaming lasted quite a while. I was finally able to turn her blood in. She was pitching such a fit while we were waiting that we were asked to leave. Actually, the nurse practitioner suggested that I take her up to the rooftop playground so that she could get all of the medicines out of her system. I took her up there and the door was locked. GREAT! Then I decided to take her for a walk. But, it was a little windy and I did not want her to get chilly. So, I did the only other thing I could think of. I called her daddy and told him I needed reinforcement. We are so thankful that he works at the hospital. He came over and helped out with her. After about an hour, she had calmed down enough to be examined. Daddy went back to work and Morgan acted as if nothing had happened. I honestly do not think she even remembers her sedation highs (actually it is not the high that gets to her; it is the coming down).
Morgan was examined and then she went into the playroom while I waited for her blood counts to come back. I waited and waited and waited. The lab had misplaced one of her tubes. This seems to happen to us quite a bit. It was finally located and Morgan was given her pentamadine. This is a medication that she routinely receives to prevent pneumocystis pneumonia. She will get it for about six months post-transplant. It takes about an hour to run this medicine.
Morgan’s white count seems to be on the way back up. All of her counts are low, but they are not that low. This is a common side effect of radiation.
Dr. McLean asked me today if I would speak with the mother of another boy with neuroblastoma who will be heading to transplant soon. I was glad to do this because it there have been so many families who have helped us on our journey (especially Grace Cain’s family). Please add Cody to your prayer list. I think he has one more round of chemo and then he will be heading to transplant.
My wonderful friends at church are organizing a spaghetti supper on Morgan’s behalf. It will be Saturday, June 7 from 4:30 to 7:30 pm. It will be held at Reynolda Presbyterian Church. Tickets are $5.00 in advance and $7.00 at the door. For more information, you can email Heather McLeod at mcldmadison@worldnet.att.net
Prayer Requests:
1) Pray the Morgan’s HAMA test will come back negative so that she can have her next antibody treatment as scheduled. If all goes as planned, we will be flying to New York on May 18.
2) Pray for the Lord to allow Morgan to remain cancer free.
3) Pray for the Lord to provide us safe travel to New York and bless our stay there. This time, my aunt Marty will be traveling with us. I am so blessed to have such wonderful support from my friends and family.
4) Pray for the Lord to protect Jerry and Holden while we are in New York.
5) Please remember to pray for all of the other children with neuroblastoma.
I will do another update on Wednesday after I have received the results of Morgan’s HAMA test. Thanks for checking in with us and may the Lord bless you all.
In Him,
Allison
Thursday, May 8, 2003 2:06 PM CDT
Hello Friends,
I am sorry for the delay in updates. But, Morgan had a clinic visit scheduled for today and I wanted to wait until after it to do an update. Morgan only has three more radiation treatments left. I can not believe how easy they have been on her (someone knock on some wood for me). She actually enjoys going. She is such a little charmer when she is getting ready to be sedated and all of the people who help put her to sleep always remark about how sweet she is. However, the nurses in the recovery room who are there when she wakes up probably have a different story to tell. She still wakes up angry, but by the time we get home she seems to be feeling okay.
Morgan’s clinic visit today was pretty routine. There were no surprises in her blood counts. The white count has dropped significantly due to being taken off of the neupogen. Her hemoglobin was much higher than last week, thanks to the transfusion she received. Her platelets have also dropped but are still within the normal range. We are scheduled to go back to clinic on Monday for another blood count to make sure her white count does not go down any further. If it does, she will be put back on neupogen again.
Today, Dr. Chauvenet decided to reduce the amount of TPN (IV nutrition) she gets. She will be cut back from twelve hours a night to eight. She was also given a prescription for megase. This is a steroid that should help increase her appetite. Jerry and I want to have her off TPN very soon so that her central line can be removed before her Make-a-Wish trip to Disney in June. Dr. Chauvenet seemed very willing to help us out with this.
Last week, I had Holden’s urine tested for neuroblastoma. We just do this to keep our sanity. Every time he eats a little less or seems kind of tired, I worry that he has this awful disease too. We like to have him tested every six months. I am very pleased to report that everything came back normal for him. (Praise the Lord!)
A sample of Morgan’s blood is now in route to New York to be tested for HAMA. We want this test to come back negative so that she can get another antibody treatment. If this test were positive, it would mean that her body is resistant to the 3F8 so there would be no point in doing another treatment. We want her to get as many of these treatments as she possibly can.
Prayer Requests:
1) Pray that the Lord will allow Morgan to remain cancer free.
2) Pray that Morgan’s HAMA test will come back negative so that she can receive another antibody treatment. We are scheduled to go back to New York on May 18 and start treatment on May 19.
3) Remember to pray for the other children who are fighting the battle against neuroblastoma. And remember their families too. When we became parents, this is not what we bargained for and it can be a tough job. We do not do it because we are any stronger than anyone else. We do it because we have no choice. Pray for the Lord to give us all the strength we need to see our children through this horrible illness.
I will do another update on Monday after Morgan’s next clinic visit. Thanks for checking in with us and for keeping us in your thoughts and prayers.
In Him,
Allison
Wednesday, April 30, 2003 1:50 PM CDT
Hello Friends,
MORGAN’S MOST RECENT BONE MARROW BIOPSIES SHOWED NO EVIDENCE OF NEUROBLASTOMA! Praise the Lord! I emailed Dr. Kushner today and he responded to me in less than 2 hours. We are thrilled, ecstatic, overjoyed etc. Now we just need to turn to the Lord and ask that He make her cancer free for the rest of her life.
Dr. Kushner also stated that she will have another bone marrow test after her next round of 3F8. The plan is for us to return to New York to start treatment on May 19. We will stay on target for this as long as her blood test on May 8 comes back negative (which means that she has not built up a resistance to 3F8).
We have three days of radiation behind us and nine more to go. Morgan is handling it just fine. She was kind of sick Tuesday morning, but since then we have seen no other side effects of radiation. I drew her blood this morning so that they could check her counts. Her white count is really high (due to neupogen) and platelets are normal. However, her hemoglobin is low. It is 8.1 and it needs to be over 10 because of radiation. Therefore, she will get a bag of blood after radiation tomorrow.
Speaking of blood, my co-workers at North Stokes High School sponsored a blood drive in Morgan’s honor while we were in New York. It was very successful and maybe she will be getting a bag that was donated there. Thanks so much to all of my dear friends at North! (And a reminder – please donate blood and platelets on a regular basis).
Prayer Requests:
1) Pray for the Lord’s blessings over Morgan’s radiation. Ask that He continue to allow it to be fairly easy on her.
2) Pray for Morgan’s blood tests next week to show that she is HAMA negative and she can continue to get 3F8 antibody treatments.
3) Pray for the Lord to grant Morgan and long and cancer-free life.
4)Remember to pray for the other children who are fighting neuroblastoma.
Thanks for checking in with us. I will do another update in a week or so (or when news happens).
In Him,
Allison
Monday, April 28, 2003 6:19 PM CDT
Hello Friends,
Morgan had her first radiation treatment today. She handled it very well. The hardest part is that she has to be sedated for it. The doctor just does not trust her to hold still during the process – I wonder why? We were there about three hours today and we will be there even less time for the rest of the days. Today they had to complete her simulation. This means they had to make sure they were radiating the right spots.
She is receiving a fairly low dose of radiation. I can not see that it has affected her at all. Once she woke up from sedation and got over her grumpiness, she has been fine. She has played hard and eaten well (well for Morgan that is) all day.
Morgan will need 11 more radiation treatments. These are done Monday through Friday only. This means we will do radiation for the next two weeks plus two days beyond that. Then we will have a few days off before we return to New York on the 18th (assuming that Morgan’s blood test comes back HAMA negative so that she can receive another 3F8 treatment). I am sure that we will need to make another trip to Duke again before we return to the Big Apple.
I can tell that Morgan is very happy to be home. She has been in such a good mood. Holden and Morgan really missed each other while we were gone and they have been playing so well together today. Check out the new picture of them by clicking on the photo album.
Prayer Requests:
1) Please pray that Morgan’s bone marrow test comes back totally negative. Ask the Lord to reveal to us that He has used the antibody treatment to remove all traces of disease from her body.
2) Pray that Morgan’s blood test will show that she is HAMA negative so that she can have another antibody treatment.
3) Remember to pray for all of the other children who are trying to win the battle against neuroblastoma.
I will do another update as soon as we get the results from Morgan’s bone marrow test. I am hoping and praying that I will be able to send out some really good news. Thanks for checking in with us and for lifting Morgan in prayer.
In Him,
Allison
Saturday, April 26, 2003 9:46 PM CDT
Hello Friends,
We arrived back in beautiful North Carolina around 5:00, just as a thunderstorm was rolling into town. We had to sit on the runway for over half an hour while the storm passed. Morgan was conducting a bit of a thunderstorm of her own inside the plane because she was very ready to get off of the plane. She did not mind letting everyone know about her displeasure in having to sit on the plane.
I am sorry that I did not do an update before we left New York. Morgan’s antibody treatments went pretty much as we expected. She experienced some pain, nausea, etc. She has had another CMV DNA test that came back negative. However, Dr. Driscoll at Duke is now thinking that maybe we should have three negative tests before she is taken off of gancyclovir and cytogam. I will be so glad when she can stop taking so many medications. I will take her to the clinic at Baptist Hospital on Wednesday so they can do another test. Hopefully, this one will come back negative and she can come off of her anti-viral medications.
Friday was a long day at clinic for us. We had to arrive at 7:00 so Morgan could have her bone marrow tests done first thing in the morning. Since she has to be sedated for this, we were happy to get it over with first thing in the morning. As soon as she was able, they started 3F8. After that was over, we waited an hour and then she got her weekly dose of cytogam. Cytogam has to be administered over three hours so this certainly made our day a little bit longer.
But, we are home now. We have Sunday off and on Monday at 7:30 a.m., Morgan will start radiation. This is not much of a break for her. I am just waiting for the opportunity to have an entire week with no medical treatment. Maybe we will get one week off before our next trip to NY.
On May 8, I will take a sample of Morgan’s blood and mail it to NY. By the following Tuesday, we will find out if she can go back for another antibody treatment (and it is certainly our prayer that she can). If the blood tests are okay, then we will return to NY around May 19. This means we get three weeks at home.
We should know the results of Morgan’s bone marrow tests sometime next week.
Prayer Requests:
1) Ask the Lord to reveal to us the Morgan no longer has neuroblastoma in her bone marrow. Pray that He is using the 3F8 antibody treatment to rid her body of this horrible disease FOREVER.
2) Ask the Lord for Morgan’s blood work on May 8 to be HAMA negative. This means that she is able to do another 3F8 treatment. The more treatments she is able to do, the greater her chances for survival are.
3) Remember to pray for the other children who are fighting this horrible disease. I have not had the opportunity to check the pages of the other children lately. After spending two weeks in NY, I have met many more children who are fighting for their lives. Memorial Sloan-Kettering is the best place in the world for children with neuroblastoma to be treated, and there are so many there.
I will do another update after Morgan has radiation on Monday. Thanks for checking in with us and for praying for Morgan.
In Him,
Allison
Tuesday, April 22, 2003 3:59 PM CDT
Hello Friends,
I want to start by telling everyone about the wonderful weekend we had. On Saturday, we took Morgan to Central Park and had a horse and buggy ride. She loved it. We had planned on taking her to the zoo, but she got tired and said that she wanted to come back to her room. On Sunday, we went out to Long Island to celebrate Easter with Jerry's cousin, Doug, and his family. It was so kind of them to open their home to us and to make us feel that we too were part of their family. Morgan had a great time and it was wonderful to have two days away from treatment.
Monday, we started 3F8 again. Monday's treatment went very well. She rested afterward, but then woke up full of energy and we really had a great day. Tuesday was not quite as good. She developed hives right afterward and has been a pistol all afternoon. She has cried, thrown up, and has been in a very bad mood. Grandma and I are trying really hard to stay patient with her and keep in mind that we have no idea how she is feeling right now.
Yesterday, we found out that she has finally tested negative for CMV. I called the nurse practitioner at Duke and she said to cut back her anti-viral meds to once a day. After she has two negative tests, we can stop the meds all together. Of course, I asked them to test her again today but we all forgot about it and left without doing another test. I will try to remember to have her tested tomorrow and hopefully it will be negative too.
The schedule is still to continue with the antibody treatment through the end of the week. On Friday, Morgan's bone marrow should be tested again. Of course we are praying that this next test will show that her bone marrow is totally clear from cancer. We will fly home on Saturday. We are all so ready to get home.
Prayer Request:
Please pray everyday that Morgan's bone marrow will show no evidence of disease. This is so important. Please ask Him to totally rid her body of this horrible disease and allow her to live a long and healthy life. I think I will be truly devasted if this treatment does not work to clear up her marrow and she has to go back on chemo again.
I am sorry that my updates are not coming very frequently anymore. It is not always easy to get down here to the computer lab to do this. I will try to do at least one more before we fly home.
Thanks for checking in with us and for continuing to pray for Morgan. We honestly believe that prayer is the ONLY thing that will save her.
In Him,
Allison
Friday, April 18, 2003 3:22 PM CDT
Hello Friends,
I am sorry that it has been a few days since I have updated the page. It seems as if everytime I get a chance to come to the lab to do one, it is closed.
We have finished our first week of the antibodies. Morgan is doing okay. The treatments are better on some days than others. The vomiting stopped after the second treatment, which is a very good thing. The medicine is infused into Morgan over a 30 minute time period. Of course, beforehand she gets pre-meds to combat the pain, hives, and nausea that accompany the treatment. She is usually pretty drowsy. The treatments are very intense for about 10 minutes. Her heart rate gets really high and she has trouble breathing. Of course, Morgan refuses any help from oxygen during this time. I think the tube scares her a bit. She cries and complains that her tummy hurts. She also gets a funny feeling in her mouth. I am not sure what this feels like because she just says "my mouth, my mouth". After the treatments, she is completely worn out. She normally has to stay in her bed in the day hospital for a few hours. Then, we make our way back to the Ronald McDonald House.
We are looking forward to our two day break from treatments. And, we are counting down the days until we will be back home. Morgan keeps telling me that she wants to go to Lewisville. It breaks my heart that I can not take her home. This is a tough way to live and we would not be surviving without your constant prayer for our family.
Please pray for Morgan daily. Please ask the Lord to remove all traces of neuroblastoma from her body. Ask Him to show us on April 25 that her bone marrow shows no evidence of disease. We would really feel so much better knowing that this nasty disease is out of her body once and for all.
And please remember to pray for all of the other children who are fighting this monster. This trip has been kind of neat in that we have finally met in person our NB friends we have corresponded with through emails and Caringbridge. This is such a hard disease, and all of these children need so many prayers.
We hope you all have a wonderful Easter.
In Him,
Allison
Tuesday, April 15, 2003 3:17 PM CDT
Hello Friends,
I turns out that the 3F8 is a little bit harder on Morgan than I thought it would be. Yesterday after I typed the update, she started complaining that her head was hurting. I gave her something for pain and a few minutes later she threw-up. She vomited several times throughout the evening yesterday. She also complained about pain in her hands. She slept well last night and when she woke up this morning she seemed to feel good.
Today's treatment was very similar to yesterday's. There was a brief period of time when she was in some very intense pain. However, she did not have as much difficulty breathing today as she did yesterday. After the treatment finished today, she just wanted to lay in the bed at the hospital. We let her rest for about an hour and a half. Then, she woke up and got sick. After that she was ready to come back to the Ronald McDonald House. She has been sick a few more times this afternoon. She is in the room resting with Grandma.
Tomorrow we will go back to repeat the whole thing over again. It is no fun at all watching her feel so bad. The only bit of comfort that I have is knowing that these same drugs that are making her sick are also removing the horrible cancerous cells from her body FOREVER.
I am asking everyone to PRAY PRAY PRAY! This is Holy Week. We are remembering that our Lord and Savior Jesus Christ took it all to the cross for us. By His stripes Morgan will be healed. Please ask the Lord to remove every single cancerous cell from Morgan's body. Please pray specifically that the test that she has on April 25 will reveal no evidence of disease.
HAPPY BIRTHDAY AUNT RUFFIN!
I will do another update tomorrow after our day at clinic.
In Him,
Allison
Monday, April 14, 2003 3:57 PM CDT
Hello Friends,
Greetings from New York City. Grandma, Morgan, and I arrived at the Ronald McDonald House yesterday afternoon. The weather is quite nice and spring is in the air.
Morgan had her first 3F8 treatment today. We had heard that the treatments can be very painful. Morgan did okay. There was a period of time for about ten minutes when she seemed to be hurting a lot. She was having trouble catching her breath and seemed frightened. However, she made it through okay and is up is in the room resting with Grandma right now. We will go back tomorrow for another dose. Morgan received pre-meds for pain and Dr. Kushner said that she may not even remember the experience tomorrow. We hope not, or it may be difficult convincing her to go back again.
We are still dealing with the bad news that we received last week. We were so hopeful that Morgan was still in remission. The truth is that she never was in remission. Dr. Kushner said today that he is very hopeful that 3F8 will clear her bone marrow. If it does not, then she will have to endure more chemotherapy.
Prayer Requests:
Please plead Morgan's case to the Lord. Ask Him to use this treatment for His glory. Ask Him to remove every cancerous cell from her body and allow her to live a long an healthy life. Morgan's bone marrow will be re-tested again on April 25. Ask Him to show us no evidence of disease at this time.
Ask the Lord to grant our family strenght. This last few days have been very difficult for all of us and we are certainly relying on the prayers of others right now.
Thanks so much for checking in with us and for lifting Morgan in prayer.
In Him,
Allison
Wednesday, April 9, 2003 9:17 PM CDT
Day +48
Hello Friends,
The final results of the bone marrow test are in. The news is not what we expected nor what we wanted. Morgan still has neuroblastoma in her bone marrow. Drs. Kushner and Driscoll do not believe that this a relapse. They think that it has been there all along. Sloan-Kettering does much more extensive bone marrow testing than anyone else. They took samples from her back as well as from her front hip bones. All of the areas came back clean except for the right front hip. This area has never before been tested.
Right now we are heartbroken and discourgaed. I can not describe how sad we and all of our family members are. We had been so encouraged by Morgan's progress and now we are left questioning everything we believed.
I guess the bright side of this is that it was detected. If we had not opted to pursue the antibody treatment, this would have gone undetected for who knows how long. This does not really change things in terms of Morgan's treatment. The antibody treatment has had some really good results in cleaning up the bone marrow. But, both doctors did stress to us that it is never a good thing to still have cancer after transplant.
We will continue with the 3F8 Treatment that Sloan-Kettering provides. She will have her bone marrow tested after each and every treatment cycle. We are hoping that her bone marrow will be clean after the first treatment.
Prayer Requests:
1) Ask the Lord to use the antibody treatment to rid Morgan's bone marrow of all neuroblastoma cells. Plead Morgan's case to the Lord and ask Him to spare her life so that she can have a wonderful testimony in the future.
2) Pray for strength for Jerry and me. We feel as if we are at our breaking point and I know that I am on the verge of giving up hope. I feel as if I can no longer pray myself so I certainly need others praying for me.
In Him,
Allison
Monday, April 7, 2003 9:36 PM CDT
Day +46
Hello Friends,
We are happy to report that our entire family is in beautiful Lewisville, NC. I called Dr. Driscoll at Duke today and asked him if it was okay for Morgan and I to return to Forsyth County until our next appointment at Duke on Wednesday. Jerry and Holden made the trip back on Sunday night. We are home, but there is no time to relax. Tomorrow I am driving back to Durham to close the vacation house down. Wednesday Morgan has to go to clinic at Duke. Thursday we have to take Morgan to Baptist Hospital for her pre-radiation workup and we will probably have to go back for more of that on Friday. I am sure the doctors at Duke will want to see her on Saturday. Then on Sunday we are heading back to New York to start the antibody treatment on Monday. This time Daddy is staying home with Holden and Grandma Vicky is heading up north with us.
Now for some really good news – Dr. Kushner emailed us today and told us that the results of Morgan’s MIBG scan are NORMAL. The spot that showed up on her liver turned out to be a spot on the film or something. Later, we got another email from him saying that the preliminary results from her bone marrow test are in and they show no evidence of neuroblastoma. We should have the final results tomorrow. The Lord is so wonderful. We have gone to Him so many times in the last eight months and He has been so faithful in answering our prayers.
Prayer Requests:
1)Ask the Lord to continue to be with us as the final test results of Morgan’s bone marrow biopsy come in. Ask Him to reveal that there is still no evidence of neuroblastoma anywhere in her body.
2)Ask for the Lord to prepare Morgan for the antibody treatment. This treatment is unlike chemotherapy in that it should not make her really sick or bring her blood counts down. However, it can cause nerve pain. Ask the Lord to allow the treatment to be totally painless for Morgan.
3)Please remember the other children with neuroblastoma. Jake is in NY right now undergoing tests. Please pray that they get the results that they want to hear. Taylor is in transplant right now. Harrison will also be starting antibody treatment on April 14, but he is doing a different protocol than Morgan because there is still some neuroblastoma in his bone marrow. Pray for the Lord to rid his marrow of this horrible disease.
4)Pray for our nation. Ask for the Lord to bring a speedy end to this war and allow all of our soldiers to come home safely. Ask for the Lord’s protection over each and every citizen of this great nation.
I will do another update on Wednesday after I take Morgan back to clinic in Durham. Thanks for all of the prayers, they are working so please keep them up.
In Him,
Allison
Friday, April 4, 2003 4:53 PM CST
Day +43
Hello Friends,
I am sorry that I have not updated recently. Everytime I came down to the computer room at the RM House, it was either closed or the server was down.
The last few days have been very busy for us. Morgan has undergone all kinds of tests and scans. She even had to have a blood transfusion yesterday. This caught us by surprise and made us stay a pretty long time at the clinic yesterday. On Wednesday, she had a bone scan. On Thursday, she had a CT scan. Today she had an MIBG scan. There was also a bone marrow test and a urine test thrown into the mix as well.
We met with Dr. Kushner this afternoon to discuss the results of these tests. The bone marrow test and the urine test are still not back yet. He is going to call me early next week to let me know about these. The CT scan and the bone scan both showed no evidence of disease. HOWEVER, (there is always a however) something showed up on her liver on the MIBG scan. This is the way the MIBG works -- she is given a radioactive isotope that attaches itself to any neuroblastoma cells that are in her body. Then she is scanned and that isotope glows on the scan. Dr. Kushner is not sure what showed up on the scan. He does not think it is anything but he wants to do some more comparisons with her other scans just to make sure. Over the last few months, there has never been a series of tests that came back "everything looks great". It seems like there is always a spot or something strange just to cloud things over and keep us from rejoicing completely.
So where do we go from here? We went ahead and signed the consent papers to begin the 3F8 antibody treatment. If this spot on her liver turns out to be nothing, Morgan and I will be returning to New York on April 13 and staying for two weeks so she can receive this treatment. We are not sure what will happen if this does turn out to be cancer on her liver. Dr. Kushner seems confident that it is not, so he did not discuss those options with us.
We are leaving the RM House tomorrow and spending the night with Jerry's relatives on Long Island. We are flying home on Sunday. We have made the decision to get the vacation house cleaned up and to move back to Lewisville. Morgan's next appointment at Duke is Wednesday and I think I will just make the drive from Forsyth county. This will probably take a lot of coordination to make sure that Morgan gets all of the drugs and things that she needs. She is still receiving meds for CMV and nightly feeds from the Duke and she will have to begin taking a series of shots on Wednesday to prepare for 3F8.
Prayer Requests:
1) Please lift Morgan in prayer and ask that this place on her liver turn out to be absolutely nothing so that she can begin the antibody therapy on her scheduled date.
2) Please pray that we will return safely to NC on Sunday and the Lord will protect our travels.
3) Remember to pray for the other children who are fighting neuroblastoma.
We have learned that nothing about this journey is simple. There is always a reason to doubt, wonder, and be terribly frightened. This is why we are continually in need of your prayers.
In Him,
Allison
Tuesday, April 1, 2003 4:09 PM CST
Day +40
Hello Friends!
We are successfully navigating our way around the Big Apple. But, please do not be too impressed -- we only have to walk five blocks from the Ronald McDonald House to the hospital. But, we made it there this morning and Morgan and Jerry are now back in the room relaxing while I do this update.
Sloan-Kettering is a lot like Duke in that they love to make you wait and wait and wait. Morgan is not the type of child who adapts well to a new situation so she expressed her displeasure in the waiting room -- sometimes rather loudly. I am hoping that she will be happier once she is used to it and she does not have to wear the mask any longer.
We met with the financial counselor today. He told me that he wants to try to pursue things further with the insurance company. He told me that they can not deny it without putting a denial in writing (which they did not do) and then they have to allow me to appeal it. He seemed very willing to work with us. The actual antibody drugs do not have to be paid for because this is a clinical trial. However, all of the tests, studies, doctor's visits, etc. will have to be paid for.
We also met Dr. Kushner today and were very impressed with him. He has a natural rapport with children. It seems like Morgan will be a good candidate for this treatment, but we will have a more definite answer to this once the results of all of her scans and tests come back. She has to have no evidence of disease in order to do this treatment, but Dr. Kushner said after looking over all of her materials that he did not expect any surprises. We were very pleasantly surprised when he told us that Morgan has some things in her favor when it comes to beating this disease. We were thrilled to hear that and owe it all to the wonderful power of our Lord!
Morgan had an echocardiogram today to make sure that her heart did not sustain any damage with the powerful cocktail of chemo drugs that she was given in transplant. This is the first of many tests that she will undergo this week. She was very tired and grouchy during this test and I am sure the person who administered the echo was not sad to see us leaving.
Prayer Requests:
1) Pray for the Lord to allow all of Morgan's upcoming tests and scans to show that she is still in remission.
2) Pray for the Lord to protect us while we are away from home and get us back to NC safely. And ask for the Lord to watch over Holden since he is away from Mommy and Daddy this week.
3) Remember all of the other children with neuroblastoma. I finally got to meet Carl and his mother in person (www.caringbridge.org/mn/carcar) And do not forget to pray for the kids who have had to undergo stem cell and bone marrow transplants.
I will do another update tomorrow. Thanks for continuing to pray for Morgan and the rest of our family.
In Him,
Allison
Monday, March 31, 2003 8:04 PM CST
Day +39
Hello Friends!
This is a quick update to let everyone know that we have safely arrived in New York. We are staying at the Ronald McDonald House. Today has been a very exciting day for Morgan. She especially loved flying and was very well behaved for the duration of the trip. This was a tall order considering that we rolled her out of bed this morning at 5:00 to get to the airport on time.
We want to thank everyone who helped get us here. Mom delivered us to the airport this morning. Jerry's aunt Boonie and his cousins Nick and Dougie picked us up at the airport on Long Island and brought us right to the door of the Ronald McDonald House.
The room is closing. I will do another update tomorrow.
Prayer Requests:
1) Ask the Lord to allow all of Morgan's tests to show No Evidence of Disease.
2) Ask the Lord to protect Morgan from any viruses or infections. It is hard to keep her sheltered while traveling and we are really worried about all of the things that she is possibly being exposed to.
3) Pray for our protection during this trip and for the Lord to keep Holden safe and happy while we are away from him.
I will do another update tomorrow after we have our meetings. Thanks for checking in with us and for keeping Morgan in your prayers.
In Him,
Allison
Saturday, March 29, 2003 7:06 PM CST
Day +37
Counts
Hemoglobin 10
Platelets 102
White Blood Cells 6.5
Hello Friends,
There is not a lot to report today. This is always a good thing. We went to clinic this morning and Morgan got her CMV medicine. Then, we came home and have done absolutely nothing for the entire rest of the day. At least our trip to New York will give us some new scenery to look at. Instead of staring at the walls of the vacation house, we will be staring at the walls of the Ronald McDonald House. At least we hope so – it is my understanding that we will call the Ronald when we arrive in New York to verify that they have a room for us. If they do, wonderful. If they don’t then it will work out because we will stay with Aunt Boonie and family on Long Island. The only problem there would be that they would have to help this bunch of bumpkins get into city every morning.
I got an email from Dr. Kushner in New York last night and he was not at all happy that no one had contacted him about Morgan’s CMV. There were a lot of things that he wanted that no one has bothered to send to him. I was able to get most of this today at clinic and I will try to run it by his office on Monday before we meet with him on Tuesday. This is so frustrating. I thought that by telling our doctors here what our intentions were, they would automatically keep the Sloan Kettering team informed. Apparently, I was wrong. According to Dr. Kushner, CMV is very rare in autologous transplant kids so he was very curious about how the diagnosis was made. I found this interesting since our doctors here at Duke act like this sort of thing happens all the time.
Prayer Requests:
1)Pray for the Lord to bless our trip to New York. Ask Him to keep us safe in our travels and during our stay. Also, ask Him to use the tests and scans that Morgan will have to reveal that she is still in remission.
2)Pray for Morgan’s CMV virus to totally disappear. I think the threat of this turning into something serious has diminished, but we still need to pray about it. Plus, the meds are beginning to take their toll on her. They are causing her already small appetite to shrink even more. The sooner we can stop these meds, the better off we will be.
3)Pray for the Lord’s blessings on all of the kids with neuroblastoma and for all of the children undergoing transplant.
4)Pray for our nation. Ask the Lord to bring a quick close to this war and for every American soldier to come home safely. Ask for guidance for our leaders and for protection for the entire nation.
I am not sure if I will have access to a computer in NY. I will update as often as I can. Thanks for checking in with us and for lifting Morgan to the Lord in prayer.
In Him,
Allison
Thursday, March 27, 2003 5:49 PM CST
Day +35
Counts
Hemoglobin 11.0
Platelets 101
White Blood Cells 7.4
Hello Friends,
Our day at clinic today was fairly routine – a lot of waiting and then getting some medicine for CMV. The new number on the CMV DNA is 2.8. This is good news because it continues to come down. We are just sitting back waiting (and praying) for it to come down to 0.0.
We found out today that they are not going to take her off of any of her IV anti-viral meds or TPN before we go to New York. This means lugging a lot of medicines up the east coast – but I guess we will do what we have to do. The medicine that she gets every other day (cytogam) has been cut back to once a week. This means that she will need to get it once while we are in NY. From my understanding, our insurance will cover 70% of this type of thing because it is for transplant follow-up, instead of pre-antibody treatment. However, we will have to do a lot of checking with the hospital to make sure they code things correctly so at least a portion of this will be paid for.
I discussed Morgan’s limp with the team today. They agreed that it is more of an irregular gait than a limp. HOWEVER, they would not give me the reassurance that it is nothing. They said that the scans she is having in New York would pick up anything that could be there. They said they would be more concerned if she seemed to be in pain, and she does not. But, they still want to check the scans to make sure she is still cancer-free. Please pray with us that there is still no evidence of cancer in her body.
I also found out today that we will be returning back to Durham after New York. We were hoping that we would get to go back to Lewisville, but that is not the case yet. Morgan will go to clinic here in Durham on Saturday and then we will be in New York from Monday to Sunday. When we return, she goes back to clinic here on Wednesday. I am missing Forsyth County more and more each day.
Prayer Requests:
1)Pray that all of Morgan’s upcoming tests and scans will show that she is still in remission and one step closer to the Lord blessing her with complete and total healing.
2)Pray for the Lord to remove all traces of active CMV from Morgan’s body.
3)Pray for our safety as we travel to New York and for blessings on Holden as we are separated from him once again.
4)Pray for the other transplant kids.
5)Pray for the other children with neuroblastoma. Taylor has just started his transplant (www.taylorwatts.org)
6)Remember to pray for our nation. Ask God to provide our leaders with wisdom and grant protection to all of those who are protecting us. Ask Him to spare this great nation from any terrorist attacks.
I will do another update after our clinic visit on Saturday. Thanks for continuing to pray for Morgan.
In Him,
Allison
Tuesday, March 25, 2003 7:29 PM CST
Day +33
Counts
Hemoglobin 10.0
Platelets 117
White Blood Cells 14.1
Hello Friends,
We had another wonderful day away from clinic yesterday. Morgan truly loves the days that we do not have to go to clinic. She has become a real homebody, but I am hoping she will come out of her shell a bit when she is able to get out and about some more.
Today was Tuesday, so this means a long day at clinic. Each patient has a “doctor day”. We see our doctor on Fridays. There are lots and lots of kids who have doctor day on Tuesday. This means that the waits are always a bit longer on Tuesday. We waited for our room in Rainbow Day for about two and a half hours. It took another two hours to administer meds, and then we came home.
The only thing going on with Morgan right now is that she is limping a bit. After I got home from clinic, I decided to call them back and talk to them about it. Dr. Driscoll said that if she is still limping tomorrow to bring her back in to clinic. After examining her for a while, I noticed that it is really more of a strange gait than a limp. She doesn’t act like she hurts at all; she just walks funny. After discussing it with my parents, we came to the conclusion that she has always had a bit of a funny walk. I now think that one of her legs is longer than the other one. Mom and I measured them tonight, and one was 20 and ¾ inches and the other was 21 ¼ inches. However, Morgan was fighting us while we were trying to measure so this may not be accurate. It seems like we would have noticed this before now, but maybe we missed it with all of our other concerns for Morgan.
We did get one discouraging piece of news yesterday. Our insurance company is NOT going to pay for treatment at Sloan-Kettering in New York. But, it is only money and if I can depend on the Lord to heal my daughter I can surely depend on Him to provide for our family. We have an appointment to meet with a financial counselor at Sloan one week from today, so hopefully we will be able to get an idea of the total cost of this treatment. I imagine that it is not going to be cheap.
As of today, the only thing I know about the CMV is that her last test came back positive. It takes another day or so to get a number for it. I am hoping that I will know if the number has gone down on Thursday.
Prayer Requests:
1)Pray for the Lord to remove all traces of active CMV from Morgan.
2)Pray that Morgan’s limp does not mean a relapse. In fact, ask the Lord for Morgan’s total and complete healing, with never a chance of relapse.
3)Pray for the other children with neuroblastoma and for the other children who have undergone bone marrow or stem cell transplants.
4)Remember to pray for our nation. Ask the Lord to grant wisdom to our leaders and protection to all US citizens – those who are in combat and civilians too.
I will do another update on Thursday. Thanks for praying for Morgan and our family.
In Him,
Allison
Sunday, March 23, 2003 9:54 PM CST
Day +31
Counts
Hemoglobin 9.4
Platelets 128
White Blood Cells 24
Hello Friends,
First, let me say how much we enjoyed not having to go to clinic yesterday. Morgan was especially thrilled. We are also looking forward to our day off tomorrow.
Today’s clinic visit was very routine. She just receives one anti-viral med there since I do all of the other stuff here at home. We were delayed a bit because after we checked in, the receptionist forgot to tell the nurses we arrived. I waited over half an hour before I went to check on it. We now have to wait in an exam room instead of the waiting room since Morgan has had a positive CMV culture. When I came out of the room, the nurses were surprised that we were there. After that was resolved, it took another 2 and a half hours for Morgan it get her medicine and for us to leave.
Morgan’s white count is pretty high. This is due to the fact that she gets neupogen every day. Therefore, her neupogen dose has been reduced. Hopefully, she will be without meds when we leave for New York.
Jerry has returned home for his abbreviated work week. This time, Grandma and Paw-Paw made the trip to Durham to stay with us. The kids are thrilled. Morgan has been attached to Grandma at the hip and Holden follows Paw-Paw everywhere he goes. Holden was in a very fussy mood today until Paw-Paw arrived.
Prayer Requests:
1)Pray for the Lord to remove all traces of the active CMV from Morgan’s body.
2)Pray for our protection for our trip to New York. I am getting kind of nervous about making the trip, but right now I feel as if neuroblatoma is a bigger threat to our family than anything else. Ask the Lord to send us a guardian angel to protect our travel, our stay, and to bring us safely back to North Carolina.
3)Pray for the Lord’s blessing on all of the children who have had to endure bone marrow transplants. Since, my last update another child has met Jesus. Little McKenzie lost her battle with leukemia. This little girl was such a fighter. If you would like to send your condolences to the family her site is www.caringbridge.org/nc/mckenziefay
4)Please remember to pray for our soldiers and for the families of our soldiers who have made the ultimate sacrifice for their country. Please pray for wisdom for our leaders and for the Lord to protect US citizens everywhere from terrorist attacks.
I will probably not update tomorrow since we have a day off from clinic. Thanks for all of the prayers that are being lifted to the Lord on behalf of Morgan and our family.
In Him,
Allison
Friday, March 21, 2003 9:00 PM CST
Day +29
Counts
Hemoglobin 13.1
Platelets 100
White Blood Cells 16.4
Hello Friends,
Today was a bit long at clinic. I think we were there about four hours. Morgan received her regular meds and then we had to wait a while because Friday is her day to see a doctor. Also, Morgan was due for her pentamadine treatment today. This is an antibiotic that she receives once a month. This medication prevents pneumocystis pneumonia. This is a routine medication and has nothing to do with her CMV. All children who undergo transplants get it for about six months. Morgan did much better taking this med than I thought she would. They administer it using an aerosol. She basically had to sit under a tent and suck the medicine in – kind of like a peace pipe or something. I sat under the tent with her and held the pipe up to her mouth and she did GREAT. She was not at all happy about it, but she managed to inhale the medicine. Incidentally, I discovered why Morgan hates those masks so much. I had to wear one while I was under the tent with her and I honestly felt like I could not breath. Plus, the strap kept folding my ears down. Now, I will have a lot more sympathy for her when she complains about wearing them. She will still have to wear one of course, but at least she will have my sympathy.
Late this evening we received a phone call from Tracy, our nurse practitioner. Morgan’s most recent CMV DNA was down to 3.2. PRAISE THE LORD! He is certainly hearing our prayers. Now, let us all stand in agreement that the next one will be down to 0.0. God has been so good to us and so faithful in answering our prayers throughout Morgan’s battle with cancer.
Stacy came over again tonight to play with Morgan. Morgan informed us that she did not want her little brother hanging around this time. She wanted to play with Stacy all by herself. So, Jerry and I took Holden out to eat and Morgan and Stacy stayed here and played. Stacy has truly been a blessing to our family and Morgan just loves her.
Prayer Requests:
1)Offer praise to the Lord for bringing Morgan’s CMV DNA numbers down and ask Him to totally rid her body of the active form of this virus.
2)Ask the Lord to grant total and complete healing to Morgan and allow her to survive this disease.
3)Pray for all of the other children fighting neuroblastoma and also the ones who have had to undergo bone marrow or stem cell transplants.
4)Remember to pray for our country. Ask for guidance for our leaders and protection for our soldiers. Ask for the Lord to prevent any terrorist attacks against this great nation.
I will probably not do an update tomorrow. Morgan does not have to go to clinic so hopefully there will be nothing to report. Thanks for your continued prayer and support.
In Him,
Allison
Thursday, March 20, 2003 7:01 PM CST
Day +28
Counts
Hemoglobin 10.1
Platelets 120
White Blood Cells 19.9
Hello Friends,
It is hard to believe that it was one month ago today that Morgan received her transplant. We are thrilled with how she is doing. If it weren’t for that pesky CMV we would be absolutely ecstatic. However, I asked the nurse practitioner today how all of the medications that she is receiving would affect our trip to New York. She told me that she believed we would have it taken care of by then. We are leaving for New York on March 31 to meet with a doctor up there who is offering a very hopeful treatment for children with neuroblastoma. We will continue to pray that we will indeed have this thing knocked out by our departure date.
Today has been a fairly ordinary day. We went to clinic and stayed about two hours. We went through the routine of getting the anti-viral meds and neupogen and being checked out by the NP. We got a piece of good news, Morgan has been declared platelet independent. This means that she is producing enough platelets on her own and will probably not need any more platelet transfusions. She probably will not need anymore whole blood transfusions either. BUT, this does not let anyone off the hook. There are still tons of people depending on blood and platelets, so donate if you can.
This evening, Morgan helped me make a pizza and bake cookies. This was a lot of fun. She was much more interested in the cooking part than the eating part. I wish I could say the same for myself. I am also hoping and praying that Morgan will be totally off of TPN before we leave for New York.
Prayer Requests:
1)Ask for the Lord to totally rid Morgan’s body of active CMV. Ask that her next test on Monday come back at zero.
2)Ask for the Lord to allow Morgan to live a long life to declare His marvelous works.
3)Pray for the other children with neuroblastoma and for the children who are dealing with bone marrow or stem cell transplants. I know that McKenzie and her family are in need of a lot of prayer.
4)Pray for our nation. Ask for the Lord to protect every US citizen from terrorists attacks and to bless our armed services personnel.
Thanks for all you do to show your love to our family.
In Him,
Allison
Wednesday, March 19, 2003 7:07 PM CST
Day +27
Counts
Hemoglobin 10.2
Platelets 116
White Blood Cells 16.2
Hello Friends,
Today was another “not so bad” day at clinic. We stayed about two hours. We were able to get into our room in the Rainbow Day Hospital almost immediately. Morgan received her anti-viral meds and then she was checked out by Tracy, the nurse practitioner. It seems as if the CMV is still causing problems. Morgan’s first CMV DNA test came at 4. These numbers can be as high as 90 something, so 4 is not really that bad. HOWEVER, her second test, which was done on Monday, came back at 8. Since the CMV DNA doubled, it was decided that Morgan will receive Gancyclovir (anti-viral med) two times a day. The good news is that we do not have to go to clinic everyday to do this. Home health came out tonight and showed me how to hook this medicine up. For now, she will get it once a day at clinic and the second time here at home. Starting Saturday, we will do it both times here and I will give her neupogen here at home too. Hopefully, our clinic visits will cut back to Monday, Wednesday, and Friday next week.
As this CMV DNA number slowly creeps up, we are slowly becoming worried. CMV can be fatal and while Morgan is nowhere near that point, we would certainly like to stop it in its tracks before it can get any higher.
Prayer Requests:
1)Pray for the Lord to remove all traces of active CMV from Morgan’s body. She will have her next CMV DNA test on Monday. Specifically ask for the Lord to show that these numbers have been reduced.
2)Pray for Morgan to have a long and healthy life and for cancer to never invade her body again.
3)Pray for the other children who are fighting neuroblastoma. Jake is now out of the hospital (Praise the Lord). And please remember the other children who have been affected by bone marrow / stem cell transplants. McKenzie is also fighting CMV and her case is a lot worse than Morgan’s. She now has CMV pneumonia and needs a lot of prayer. She has been readmitted back to the unit.
4)Pray for our nation, especially ask for protection of all US citizens as we enter uncertain times.
Thanks for your continued prayers for Morgan. We know that it is prayer that has brought us this far in the journey and prayer will carry us the rest of the way.
In Him,
Allison
Tuesday, March 18, 2003 8:54 PM CST
Day +26
Counts
Hemoglobin 14.8
Platelets 84
White Blood Cells 6.0
Hello Friends,
Well, at least there were no emergency call backs to the clinic today. We spent five hours at clinic today, but three hours of that was waiting for a room in Rainbow Day Hospital. Once we got our room, Morgan got her anti-viral meds and neupogen. Then, she was checked out by a nurse practitioner and we came back home. When we got back to the house, she wanted to swing. We have a little swing hanging on the car port, so I let her stay out and swing for fifteen minutes or so.
Morgan’s best buddy, Stacy, came by to play with Morgan and Holden so Mom and I went out to dinner. It was nice. That is two days in a row that I escaped; I feel so spoiled.
Tomorrow it is back to clinic and it will probably be a long day because she has to receive two anti-viral meds instead of the one that she normally gets.
Prayer Requests:
1)Pray for the Lord to remove all traces of the active CMV from Morgan’s body.
2)Ask the Lord to give Morgan a long healthy life and to use her illness for His glory.
3)Remember to pray for the other children with neuroblastoma and the children who are BMT patients.
4)Remember to ask for the Lord’s protection over all citizens of the United States.
Thanks so much for checking in with us and for praying for Morgan.
In Him,
Allison
Monday, March 17, 2003 8:43 PM CST
Day +25
Counts
Hemoglobin 12.6
Platelets 95
White Blood Cells 10.8
Hello Friends,
Today has been a very long day. We started out this morning with a very routine clinic visit. We spent about two hours in Rainbow Day Hospital while Morgan received her anti-viral meds and her neupogen.
I had a special treat today. One of my college roommates, Crystal, lives in Raleigh. She came to the vacation house and picked me up and we went out for a late lunch. It was wonderful spending the afternoon together and catching up on old times. Amy (the third roomie) if you are reading this, please know that we are planning an outing to celebrate the fact that the three of us have known each other for 10 years). The Lord knew I would need a late lunch and a little relaxation to prepare me for a long evening.
You would know that the one day I am not hanging around the vacation house, I get a phone call telling me to bring Morgan back to clinic. It seems that her cultures for CMV have come back positive. She was scheduled to receive one of the anti-viral meds only once a week, and now she has to get it every other day. Therefore, we had to return to Rainbow Day Hospital so she could receive this. We ended up getting home around 8:30.
So, what is the deal with the CMV? The virus is still active in Morgan’s body. When I talked to the nurse practitioner I asked him how serious this is on a scale of 1 to 10. He thought about that for a second and replied, “1”. However, CMV can become serious, so we need to be in constant prayer that the Lord keeps this thing under control.
Prayer Requests:
1)Pray for the Lord to not permit this CMV to begin attacking any of Morgan’s vital organs. Ask Him to remove the active virus from her body before it has the chance to become serious.
2)Pray for the Lord the grant Morgan complete healing and to allow her to enjoy a long and healthy life.
3)Pray for the other children with neuroblastoma and for the other children who have undergone transplants.
4)Pray for our nation as we embark on war. Ask for the Lord to protect our service men and women and to protect all of our citizens from terrorists attacks.
Thanks for all that you do to show our family love and support.
In Him,
Allison
Sunday, March 16, 2003 8:32 PM CST
Day +24
Counts
Hemoglobin 10.2
Platelets 83
White Blood Cells 13.1
Hello Friends,
Today got us off to a nervous start. Just before leaving for clinic, Morgan started limping and complaining that her leg was hurting. For those of you who have been following this story from the beginning, you know that this is how it all began for us. As I was driving to clinic, I was playing out all of the horrible scenarios in my mind. Then it hit me – God has taken care of Morgan up to this point and the devil is trying to convince me that all of a sudden, He is going to stop taking care of her. At that moment, I felt the peace of God. Of course, I spoke with the nurse practitioner about it at clinic, and she reassured me that it is the neupogen that she is now receiving regularly. She sent me home with some Tylenol, and by this evening Morgan was dancing all over the house.
Our clinic visit was short today. Morgan got her meds in less than two hours and we were on our way back to the vacation house. We spent the rest of the afternoon at home enjoying being together. This evening, Grandma came to Durham to pull her shift and Jerry returned to Forsyth County to get a few days work in.
Prayer Requests:
1)Pray for the Lord to keep Morgan’s CMV under control. She will have another test for the virus tomorrow. Pray that it comes back negative.
2)Pray for the Lord to never allow Morgan’s cancer to come back.
3)Remember to pray for all of the other children with neuroblastoma and all of the other children who have had to undergo stem cell or bone marrow transplant.
Thanks so much for your continued prayer and support.
In Him,
Allison
Saturday, March 15, 2003 7:02 PM CST
Day +23
Counts
Hemoglobin 10.4
Platelets 96
White Blood Cells 15.7
Hello Friends,
I have decided that weekends are my favorite days at clinic. There are not as many people there, so we got in and out pretty quickly. Today, Morgan had to check into Rainbow Day Hospital to get her anti-viral meds and a dose of neupogen. Her white count was already high and I am sure after the neupogen it will be hitting the roof. The orders are to give it to her everyday, but I can not imagine them doing this if the count gets really high. However, the anti-viral meds are supposed to bring it down some. I was particularly proud of Morgan’s platelet count. It was 96, and 150 is normal. She has not received any blood or platelets since before discharge.
Yesterday, the doctors discontinued Morgan’s heparin. This was the medicine that she was getting 24 hours a day through her IV. She was so happy to be without this. Every so often, she will look at me and say “Look Mommy, I not hooked up anymore.” She still has to be hooked up at night for her TPN, but this does not interfere as much with her active lifestyle.
Prayer Requests:
1)Ask the Lord to keep Morgan’s CMV under control. Ask Him to keep it mild and not permit it to turn into anything serious.
2)Ask the Lord to never allow Morgan to relapse.
3)Remember to pray for the other children with neuroblastoma and the children who have been affected by stem cell and bone marrow transplants. I have recently learned that Cody has relapsed so keep him in your prayers (www.forcody.org).
Thanks so much for taking time to check in with us and keeping Morgan in your prayers.
In Him,
Allison
Friday, March 14, 2003 7:16 PM CST
Day +22
Counts
Hemoglobin 12.8
Platelets 70
White Blood Cells 4.2
Hello Friends,
Today was a very long day at the clinic. Morgan and I were there about eight hours. We spent the first hour waiting to be weighed in and then two more hours waiting for the nurse practitioner to see us. It made me kind of ill, but then I found out the delay was caused by the fact that there is a critical patient on the unit, so I really could not complain. We spent the rest of the time in Rainbow Day Hospital receiving medications.
We received a little more explanation regarding the CMV virus. Morgan’s test revealed that she does indeed have an active case of the virus. But, it is not active in terms that she needs to be on isolation or anything. At least not yet, they took cultures of her blood and urine and if either of those comes back positive, she will have to be isolated from the other patients in clinic. The doctors believe that right now she has a mild case of CMV, but they are still going to treat it aggressively. In the past, they have lost one autologous transplant patient as a result of CMV.
Morgan will receive anti-viral medications through her IV for approximately the next three weeks. I guess this means we will be here in Durham at least that long. We are going to start out receiving all of those meds in clinic (through the weekend) and then we will start administering most of them at home. Also, because these medications can cause havoc in the bone marrow she will get more frequent doses of neupogen to keep those white cells growing.
I guess the bottom line is that Morgan is okay right now. In fact, she looks and acts like she feels great. But, we certainly do not want this to turn into a more serious situation. Therefore, please pray for that specifically.
Prayer Requests:
1)Ask the Lord to allow Morgan’s RSV to remain mild. Ask Him to permit it to be easily treated and not cause any complications for her.
2)Ask the Lord to grant Morgan a long, cancer-free life.
3)Remember the other children with neuroblastoma and the other children who are or who have been on the transplant unit.
Thanks for praying for Morgan.
In Him,
Allison
Thursday, March 13, 2003 6:48 PM CST
Day +21
Counts
Hemoglobin 11.4
Platelets 67
White Blood Cells 8.2
Hello Friends!
Last night after I typed the update, I checked my email. I had an email from Dr. McLean, one of Morgan’s doctors at Brenner. He sent an email to Dr. Kushner, a doctor at Sloan-Kettering, and forwarded a copy of it to me. In that email, he described Morgan as a three-year old female in REMISSION! We have pretty much understood this since her last set of scans, but no one has ever used that word with us before. It was so nice to see it in writing.
As you can see, the blood counts leveled out and are much more normal than yesterday. Our clinic visit was fairly routine and we only had to stay two hours. However, the phone rang at 4:45 and it was one of the nurse practitioners who sees Morgan. He informed me that a blood test for the CMV virus came back positive. He asked me to draw another sample of her blood so this test can be run again. I took the sample and immediately took it in to clinic. Now – what does all of this mean? The answer is that we really do not know. CMV is a common infection that is very mild in most people. When Morgan went in to transplant, she tested positive for CMV. This means that she was exposed to it at some point in her life and it was dormant in her body. However, stem cell transplants can reactivate the virus. The infection can be mild or life-threatening. I guess it is possible that we are approaching our first real bump in the road. Please pray that this will not be anything serious.
Prayer Requests:
1)Please ask the Lord for CMV to not cause any complications for Morgan. Ask Him to show that she does not have this virus.
2)Ask the Lord to grant Morgan total healing. Ask Him to give her a long and healthy life and give her many years to be in His service.
3)Remember to pray for the other children with neuroblastoma and the children whose lives have been affected by bone marrow transplants.
Thanks for your continued prayers and support.
In Him,
Allison
Wednesday, March 12, 2003 6:30 PM CST
Day +20
Counts
Hemoglobin 15.6
Platelets 38
White Blood Cells 9.0
Hello Friends,
Morgan’s counts were kind of weird today. Her hemoglobin jumped from around 11 to 15.6 and the platelets dropped from 64 to 38. The nurse practitioner we saw thought that this could have just been a screwy lab draw. Hopefully, things will be more within range tomorrow. Otherwise, it was a very routine clinic visit. The decision was made to start weaning her off of the TPN. She was receiving over 900 ml and that has been reduced to 800 ml. Hopefully, by receiving less of the IV nutrition she will want to consume even more on her own. She is still eating some, but not enough to sustain her.
Jerry has returned to Durham and Mom has gone back to Lewisville. The kids were sad to see Grandma go, but they were very happy when their Daddy arrived.
Prayer Requests:
1)Pray for the Lord to protect Morgan from all types of infections. We certainly need her to stay as healthy as possible as she is recovering from transplant.
2)Pray for the Lord to bless Morgan with total healing. Ask that He never permit this horrible disease to return to her body.
3)Pray for the other children with neuroblastoma. Jake is having a tough time right now recovering from his most recent round of chemo. Say an extra prayer for him (www.caringbridge.org/nc/hopefor). And remember all of the children who have been patients on 5200.
Thanks so much for the prayer and support you are giving us.
In Him,
Allison
Tuesday, March 11, 2003 9:09 PM CST
Day +19
Counts
Hemoglobin 12.2
Platelets 64
White Blood Cells 3.7
Hello Friends,
Today was our first long day at clinic. I guess the term long is relative. I talked with some parents today who have stayed for nine hours. We were only there for four. Morgan had to have some neupogen to bring that white count back up. Otherwise, she is doing great. Her hemoglobin and platelets are actually coming up on their own now; she has not had to have a transfusion of any type since before we were discharged.
We moved to Durham one month ago tonight. This has been a very eventful month for us and I can not believe how quickly it has passed us by. There has not been any discussion yet pertaining to when Morgan will be released back to Lewisville. We have made the arrangements for our first trip to New York. We are flying to Long Island on March 31. Jerry’s wonderful aunt, Boonie, is going to meet us at the airport and make arrangements for us to get into the city. We may even move in with her family for the week if our plans to stay at the Ronald McDonald house fall through. This first trip to New York is mostly for tests and consultations. We are pursing the antibody treatment that Sloan Kettering Hospital offers in hopes of preventing a relapse. We are also depending on a lot of prayer to help prevent relapse too.
Pray Requests:
1)Ask the Lord to protect Morgan from any infections. Even though she now has a white count, her immune system will not be functioning normally for quite some time. We need for the Lord to shield and protect her from anything harmful.
2 Ask the Lord to allow Morgan to achieve complete healing. Ask Him to never again permit cancerous cells to start growing in her body.
3)Remember to pray for the other kids with neuroblastoma. Carl had his transplant today. And remember to pray for the kids on 5200 and the ones who have been recently discharged and are still going to clinic. I am meeting so many strong children and their families.
Thank you for continuing to hold Morgan in your thoughts and prayers.
In Him,
Allison
Monday, March 10, 2003 8:43 PM CST
Day +18
Counts
Hemoglobin 11.2
Platelets 53
White Blood Cell 5.5
Hello Friends,
I have some very sad news to report. Reese Coble passed away this afternoon. If you would like to go to his website and send condolences, the address is: www.caringbridge.com/nc/reesecup
Morgan is still doing well. She did act kind of like she felt bad at clinic today and she complained that her tummy was hurting. The nurse practitioner we saw said that this was probably due to the mucousitis working its way out of her digestive tract. Once we came home, she seemed fine. She even ate a whole piece of toast today. This is a post-transplant record.
Morgan is very excited to have her grandma here with her for a few days. Grandma is very dismayed by the fact that when you are here, you get a steady diet of kid’s videos. I think she was expecting to watch Seinfeld re-runs at 7:30. I told Grandma that she can pick what we will watch after her bone marrow transplant.
We had another short day at clinic. The counts were good so they just looked Morgan over and sent us home. The white count is still hovering above that 5.0 mark so they are holding off on a dose of neupogen. I am amazed that she has gone almost a week without blood or platelets. The Lord is taking good care of her.
Prayer Requests:
1)Ask the Lord to continue increasing Morgan’s appetite. We are seeing improvement each day and are looking forward to the day they tell us the TPN can be discontinued.
2)Ask the Lord to grant Morgan complete healing. Ask Him to never allow her to relapse.
3)Pray for the other kids with neuroblastoma and for all of the children on the transplant unit. Please remember Reese’s family in your prayers. Ask the Lord to give them the strength and support they need to make it through this very difficult time.
Thanks for continuing to pray for Morgan.
In Him,
Allison
Sunday, March 9, 2003 9:17 PM CST
Day +17
Counts
Hemoglobin 11.1
Platelets 47
White Blood Cells 5.6
Hello Friends,
Today was another uneventful day. This is GREAT news. After the way our lives have been the last eight months, we LOVE uneventful days. But I don’t guess they make for very exciting journal entries.
I took Morgan to clinic this morning. The counts were good so we came back home. Her white count is now down to 5.6 and this is totally normal since she has not had any neupogen since Tuesday. When the count drops below 5.0, she gets the neupogen, which stimulates the growth of white blood cells. She will probably get a dose tomorrow. Therefore, tomorrow could be our first long clinic visit.
We took advantage of the beautiful weather and went out for another short walk. This time we went to Research Triangle Park and walked on the path there. I think Morgan was highly disappointed, because she kept asking to see the Triangle Park. I think she had something with swings and slides in mind. It will be so nice when we can take her out of the house without wearing a mask. This should be possible somewhere around Day +100.
Jerry is going back to work tomorrow. He and Holden made the trip back to Forsyth County tonight. Tomorrow Holden is going to return with my mom, who is coming to Durham to help out with the kids while Jerry is working. Jerry is going to work three days and then return to Durham Wednesday night. We are so blessed that Morgan is doing well, and Jerry can get some work done. It is also a blessing that my mom is helping all of this fall into place.
Prayer Requests:
1)Ask the Lord to continue working on Morgan’s appetite. She is still nibbling, but she will have to start doing some substantial eating before she can come off of TPN.
2)Ask the Lord for Morgan’s complete healing. Ask that He never permit this horrible disease to return to her body.
3)Remember the other children with neuroblastoma in your prayers. Also, remember the children on the transplant unit. Reese is still in critical condition and could really use prayers from EVERYONE who reads this.
There are links to the sites of other children on the picture page, which you can get to at the bottom of this page.
Thanks for your continued prayers.
In Him,
Allison
Saturday, March 8, 2003 6:57 PM CST
Day +16
Counts
Hemoglobin 11.5
Platelets 48
White Blood Cells 9.8
There are new pictures on the picture page.
Hello Friends!
We are pleased to report that nothing much is going on here in Durham. The nurse came this morning and we drew Morgan’s blood. Holden and I ran it to the lab. Then I came back and got Morgan, and we were off to clinic. It may have been because it is Saturday or drawing the blood may have made things quicker, but we did not stay at clinic as long today as we have the last two days. Morgan and I were at home by 10:15.
Her counts are still good, so she did not need blood, platelets, or neupogen. Tomorrow morning I am going to try my hand at drawing the blood samples myself. I think I can manage. If not, then there is no pressure. I will just tell them they need to do it when we get to clinic. It just means waiting a little longer.
The only other thing we did today was take advantage of the glorious weather. We put the kids in the stroller (Morgan wearing a mask of course) and took them out for a short walk. It was such a beautiful day that we could not resist. Hopefully, all of that cold weather is gone for good.
Prayer Requests:
1)Pray for the Lord to stimulate Morgan’s appetite so she can come off of the TPN.
2)Pray for the Lord to grant Morgan complete healing. Ask Him to never allow cancer to return to Morgan’s body.
3)Remember to pray for the other children with neuroblastoma. Trey is now in the hospital at Duke having another round of chemo. Ask for the Lord to make it an easy one. Sarah’s mother is reporting some good news. The doctors have decided that the spot that showed up on a previous MIBG scan, is NOT cancer. Praise the Lord!
4)Remember to pray for all of the children on the transplant unit. Ask the Lord to remove the virus from Reese’s lungs so that he can be moved out of PICU.
You can see the websites for other kids by clicking on the Caringbridge link on the picture page.
Thanks for the care and concern that you have shown our family. And most importantly, thank you for all of the prayers.
In Him,
Allison
Friday, March 7, 2003 7:37 PM CST
Day +15
Counts
Hemoglobin 11.9
Platelets 32 (low)
White Blood Cells 12.7
Hello Friends,
Well, so far so good. Our second day out of the hospital has been fairly uneventful. I took Morgan to clinic this morning. Her counts were good so she did not need blood, platelets, or neupogen. Her white count dropped pretty dramatically from yesterday to today, but that is normal since she has not had any neupogen since Tuesday night. When the white count gets low, they will give her a dose. She is doing very well. Many kids have to come out of transplant on a regular dosage of neupogen, so she is doing great not to need it every night.
She is beginning to eat a bite here and there. She still gets sick sometimes in the morning, but she is able to hold down the food and drink that she is taking. Today she ate half of a graham cracker, a few bites of waffle, and one bite of a fish stick. She had a juice box, about 2 ounces of water, and a few sips of tea. Hopefully, the appetite will increase and she will be able to come off of the TPN. I successfully hooked up her TPN with no difficulties. I am kind of proud of myself.
Jerry went to Lewisville today to pick up Holden. I must say that the house is a lot louder now that he is with us. Morgan and Holden were very happy to see each other and I am thrilled to have our whole family together once again.
Tomorrow it is back to clinic. The home health nurse is coming around 7:00 am to show me how to draw blood for Morgan’s labs. This should save us a little time at clinic. We spent about three hours there today, and again most of this time was waiting. I am hoping that the time will decrease if we do not have to wait for them to draw her labs and test the blood. The plan will be to draw labs here, take them in, and then come back and get Morgan ready and head back out to clinic.
Prayer Requests:
1)Please pray that Morgan will be completely healed. Ask for this horrible disease to never return to her body again.
2)Ask for the Lord to stimulate Morgan’s appetite so that she can come off of TPN.
3)Remember to pray for all of the other children with neuroblastoma. Trey is in the hospital now undergoing round #6 of chemotherapy.
4)Pray for all of the children undergoing transplant. Remember to lift up Reese and ask for healing for his lungs.
Remember that you can see the sites of other children by clicking on the Caringbridge link on Morgan’s picture page.
As always, thank you so much for checking in with us and for your continued prayers on Morgan’s behalf.
In Him,
Allison
Thursday, March 6, 2003 7:44 PM CST
Day +14
Counts
Hemoglobin 12.4
Platelets 39 (low)
White Blood Cells 21.7
Hello Friends,
Our first day out of the hospital has been great. Jerry and I are walking zombies because Morgan did not have the urge to sleep last night. She woke up at 1:00 am and stayed up until 3:30. Then she napped from 3:30 until 7:00. She seems totally rested; Jerry and I are very tired. Hopefully, tonight we will rest.
We were at clinic from 9:00 am until noon. This was really not as long as I thought we would be there. Most of that time was spent waiting, but it was not a bad wait. We were in the “fish tank room” by ourselves and Morgan was content watching TV and playing. The fish tank room does not have a fish tank in it. It is a special isolated waiting room and only the BMT children are allowed to wait in there.
Morgan’s counts were all good, so she did not need blood or platelets. She has also been prescribed neupogen as needed at clinic. She will get doses of it when her white count drops down too low. It is still very high now. You may remember from previous entries that Morgan used to receive neupogen shots. That is no longer the case. Now, she will have her neupogen ran through her central line. I am sure Morgan appreciates that. Dr. Driscoll said that Morgan is still doing great. The only concerns he had were with her potassium and magnesium levels being too high. Therefore, they changed her TPN prescription, lowering the amounts of these two elements.
The home health nurse came out again tonight and watched me hook Morgan up to her TPN IV. I feel fairly comfortable it now, so tomorrow I am going solo.
The rest of the day we just spent relaxing here at the house. Tomorrow morning, I will take Morgan back to clinic and Jerry is going to drive to Lewisville to pick Holden up. Morgan really wants to see him, and his stomach problems have cleared up so we are going to bring him to Durham. I am sure they will have a great reunion tomorrow.
Prayer Requests:
1) Pray for Morgan’s complete healing. Ask that the Lord never permit any new cancerous cells to grow in her body.
2) Pray for the Lord to protect Morgan from any infections that could send us back to the hospital. Even though her white counts are high, her immune system is still not normal. She will need the Lord’s protection against illnesses for a while.
3) Pray for all of the children with neuroblastoma. Carl and Sophie are currently in transplant. Jake and Taylor are still in the hospital with fever and neutropenia.
4) Pray for all of the children on 5200. I have not checked Reese’s site today, but I am sure he could still use some prayer.
Remember to look at the web pages of these kids by clicking on the Caringbridge Link on Morgan’s picture page.
Thanks for all of the prayers and support.
In Him,
Allison
Wednesday, March 5, 2003 9:14 PM CST
Day +13
Counts
Hemoglobin 11.9
Platelets 37 (low)
White Cells 25.8
Hello Friends,
HAPPY BIRTHDAY PAW-PAW! Today was the perfect day for Morgan to be discharged because it is her Paw-Paw’s birthday. Paw-Paw kept Morgan full time right after I went back to work after her birth. She stayed with him from the time she was three months until she started daycare at 11 months. Grandma was still working then, so Paw-Paw did most of it by himself. Morgan actually said “Paw-Paw” before she said “Mama”.
We are now relaxing at the vacation house. It has been a very tiring day, and I think that we will all sleep very peacefully tonight. We were able to leave the hospital around 4:00. We had to wake Morgan up to get her to leave. This put her into a very bad state of mind. She did not want to wear the mask and let everyone know so, quite loudly. Whenever a patient leaves 5200, they have a confetti party. This means that the nurses and other patients stand by the exit and throw confetti and cheer. Morgan was probably the unhappiest outgoing patient in the history of the unit. She was screaming and crying and the whole confetti thing made her angry.
As soon as we got home, we began the task of unpacking. The home health nurse came out a little later and showed me how to hook up her TPN (IV nutrition) at night. We will have to do this until Morgan begins eating on her own. Also, Morgan gets a continuous flow of a medicine called Heparin by IV. This medicine keeps her liver functioning correctly. Morgan is on a few other oral medications, but we came out of there with not many meds (by 5200 standards).
At this point, everything is unpacked and Morgan is getting ready to bed down for the night. Tomorrow will be our first post-transplant clinic day. From what we understand, we will spend several hours at clinic tomorrow. This seems to be pretty standard information from all of the other transplant parents.
Prayer Requests:
1) Pray for the Lord to protect Morgan from any fevers, infections, viruses or anything thing else that could send her back to the hospital. We are asking that the Lord allow Morgan to never have to spend another night in a hospital.
2) Pray for the Lord to use this for His glory. Ask for Him to totally cure Morgan and to never allow her cancer to relapse.
3) Pray for all of the other children with neuroblastoma.
4) Pray for all of the children currently undergoing stem cell / bone marrow transplants. Please continue to pray for Reese. He still is not doing well.
You can see the web sites for many of the children I mention by clicking on the Caringbridge link on Morgan’s picture page.
Thanks for all of your prayers. They have brought us through transplant and now we just need for them to help assure Morgan’s good health for many many years to come.
In Him,
Allison
Tuesday, March 4, 2003 7:57 PM CST
Day +12
Counts
Hemoglobin 11.9
Hemocrit 0.35
Red Blood Cells 3.97
Platelets 54 (low)
White Blood Cells 17.4 (high)
ANC 14,964
Dear Friends,
The plan is still to discharge Morgan tomorrow. However, we found out today that there may be a delay. It really has nothing to do with Morgan’s health. The home health agency was supposed to contact us today, and they did not. If they do not contact us in the morning, discharge will be delayed. This is a tad bit annoying, but we are still getting out way early compared to most kids on the unit, so we are not complaining.
Plus, I don’t think that Morgan felt as well today as she has been feeling. She seemed more tired and had more episodes of vomiting than she has had in quite a while. This may be a result of the fact that she is being weaned off of the morphine. It will not hurt our feelings if they feel like they need to keep her here to watch her. I would much rather stay, than go to the house and then have to come back. My personal goal is once we are out of here, to not have to come back.
We are very excited about getting out of the hospital. But, as with any change, there are some anxieties. We will be leaving the “safe” hospital environment and going out into the world. There will be IV medications to give, blood samples to take, dressing changes, cap changes, and many trips to the clinic.
Morgan’s buddy, Stacy, came back tonight so Jerry and I could go out to dinner once again. Morgan just loves her. In fact, when we came walking in the door after our date, Morgan told us that we needed to leave.
I am very happy to report that Holden is feeling better. I called home to check on him and mom said that he is eating again and the upset tummy episodes have stopped. Praise the Lord. I think that Holden and Smith spent the day helping Paw-Paw pick up some limbs that came down from the ice storm. I am sure that was quite the adventure. Of course, Holden will not be coming back to Durham tomorrow since tomorrow is discharge day (hopefully) and we will probably be very busy.
Prayer Requests:
1)Continue asking the Lord to never allow Morgan to relapse.
2)Ask the Lord to give Jerry and me the ability to take care of Morgan outside of the hospital and to protect Morgan from any infections after we are discharged.
3)Remember to pray for the other children with neuroblastoma. Jake is having a tough time right now with fever and neutropenia.
4)Remember to pray for the children here on 5200. Reese has not improved, but he has stabilized. Please lift him up in prayer.
(Remember to check the sites of many of these children by clicking the Caringbridge link on Morgan’s picture site.)
Thanks so much for your faithful prayers.
In Him,
Allison
Monday, March 3, 2003 7:52 PM CST
Day +11
Counts
Hemoglobin 7.5 (low)
Hemocrit 0.23 (low)
Red Blood Cells 2.55 (low)
Platelets 16 (low)
White Blood Cells 4.5 (WOW!!!)
ANC 2655
There are some new pictures on the picture page!
Hello Friends!
As you can see from above, Morgan’s white blood cells are growing like crazy. There are actually different types of white blood cells – Segs, Bands, etc. The composition of these cells determines whether or not Morgan’s immune system is functioning. After her ANC has been over 500 for three days, she has officially engrafted. We never did get the results from yesterday’s ANC, but today she was way over 500 (2655). What does this mean? It means that we could be discharged as early as Wednesday, as long as things continue to go so well.
Morgan had a terrific day today. She was up and out of bed for most of the day. We ventured back into the hallway today, where she climbed onto one of the riding toys for the first time since before transplant. We went to the family room to read books and played games for well over an hour. A friend from church, Kim Hawkins, brought a dress-up set to Morgan and she was out of bed playing dress-up for quite a while. She also got a new set of art pens from Grandma and Paw-Paw today, so she spent some time being an artist.
Stacy came to sit with Morgan this evening so Jerry and I went out to dinner. It was nice for the two of us to have a nice, quiet, long meal. We took advantage of the fact that Holden is still in Lewisville. Speaking of Holden, his stomach still is not better. I am really praying that tomorrow he will show no more symptoms.
Prayer requests:
1)Pray for the Lord’s continued blessings on Morgan. Ask Him to use this transplant for His glory and to never allow this cancer to relapse.
2)Pray for the Lord to protect Morgan from any type of infection that could cause complications. Ask Him to shield her from everything harmful.
3)Pray for the Lord to comfort and cure Holden’s upset stomach. I want him to come back to Durham, but that can not happen until he is feeling better, especially now that Morgan seems fairly close to discharge.
4)Pray for all of the children with neuroblastoma. Jacob and Taylor are both in the hospital with fevers. Carl was admitted to a hospital today to start his transplant and Sophie will be starting (her second transplant) in just a few days.
5)Pray for the other children here on 5200. Reese is in need of a lot of prayer. He had to be admitted to PICU and placed on a ventilator.
Remember that there are links to many of the children I mention on Morgan’s picture page.
Thanks for your continued prayers for Morgan.
In Him,
Allison
Sunday, March 2, 2003 9:39 PM CST
Day +10
Counts
Everything was pretty much the same as yesterday, except for the WHITE COUNT, which was 1.3!!!!!!!!!!
Hello Friends,
Morgan had a terrific day today. It is amazing how much better she is feeling now that the white counts are on the rise. 1.3 today!!!!! Can you believe it! The Lord certainly is good to us. It is amazing that He has answered our prayers so quickly.
Dr. Driscoll made rounds today and once again said that Morgan is doing great. He even mentioned the possibility of discharge either late this week or early next week. Of course discharge does not mean going home to Lewisville, but it does mean that Morgan will be moving into the vacation house and the four of us will be reunited as a family. It still will not be a normal life, but at least we will be together.
Of course, I am rejoicing the fact that Morgan is doing so well. And then on the other hand, I am very anxious that the bottom is going to fall out on us at anytime. Morgan has done remarkably well over the last 7 months of treatment. We must keep praying that things continue to go as well for her and she makes a complete recovery. The relapse rates for neuroblastoma are fairly high. Of course, those are words that we never want to hear the doctors tell us. We believe with prayer, Morgan will be able to overcome this horrible disease.
Holden and I made a road trip to Lewisville today. We visited with Grandma and Paw-Paw. Uncle Mike and Aunt Ruffin came over with Smith and Baby Rachel. It was nice to be at home again, and to be able to relax for a little while. However, it was kind of bittersweet, because with the other children there, it made Morgan’s absence be felt tremendously. However, it will not be too long before she is right back in the middle of the action again.
Holden is going to stay in Lewisville for a few days. We figured that it would be best for him to stay away as long as his stomach continues to be upset. When you have one child with a terrible disease like cancer, gone are the days of routine illnesses. Every time something like a little bought of diarrhea comes up, I begin to think about all of the things that could possibly be wrong with him. I will give this thing a few more days to run its course, and then I will be marching him into the pediatrician’s office with a very detailed list of all the tests I want them to run on him.
Prayer requests:
1) Pray for the Lord’s blessing on Morgan’s transplant. Ask Him to allow it to continue progressing smoothly and for it to cure her totally with never any chances of relapse.
2) Pray for continued growth of the white blood cells.
3) Pray for Holden’s stomach troubles to be cured.
4) Pray for the other children with neuroblastoma. Carl is entering the hospital (not Duke) tomorrow to begin his stem cell transplant.
5) Pray for the other children on 5200. There are six empty rooms on the unit right now and this is very unusual. Two brothers from Greece are being moved in tomorrow. They have a genetic condition in which a transplant is the only cure.
Remember that there are links to the web pages for many of these children on Morgan’s picture page.
Thanks for your continued prayers for Morgan and the rest of our family.
In Him,
Allison
Saturday, March 1, 2003 9:09 PM CST
Day +9
Counts
Hemoglobin 8.2 (low)
Hemocrit 0.24 (low)
Red Cells 2.74 (low)
Platelets 29 (low)
White Cells 0.3 (up 0.2 – Praise the Lord)
Jerry has put some new pictures on the picture page. Click the link at the bottom of the page to see them.
Hello Friends!
Morgan is doing so much better. She had a really good day today. She was a lot more active and there is a spark of her old self that is evident. Dr. Driscoll made rounds today and said that she still doing exactly what she is supposed to be doing. He said that she is not totally past the stage where complications could arise, but it is unlikely since she has done so well up to this point. He even mentioned that if she continues to do this well, she could be discharged sometime in the next two weeks.
Her viral battery came back negative. This means that they were not able to find any viruses in her nasal secretions. These are the preliminary results. They will run a culture for several days just to make sure that nothing pops up.
Morgan had to have another platelet transfusion today. She is still managing to avoid getting a blood transfusion. Her hemoglobin has been hanging at 8.2 for the last two days and they will not transfuse her until she drops below 8.
Prayer requests:
1)Ask the Lord to continue to allow this transplant to go smoothly. Ask Him to use it for complete healing and to never allow Morgan to relapse.
2)Ask the Lord to permit those white cells to continue to grow.
3)Say a prayer for Holden too. He seems to have a slightly upset stomach, which has caused a very bad diaper rash. He is in a lot of pain and could use the Lord’s healing.
4)Remember to pray for all of the other sick children. Remember those that have neuroblastoma and those who are hear on 5200. There are links to many of their websites on Morgan’s picture page.
Thanks for checking in with us and for your continued prayers for Morgan.
In Him,
Allison
Friday, February 28, 2003 9:57 PM CST
Day 8
Counts
Hemoglobin 8.2 (low)
Hemocrit 0.24 (low)
Red Cells 2.74 (low)
Platelets 17 (low)
White Cells 0.1 (low) THIS IS NOT A TYPO – MORGAN’S WHITE COUNT WAS ACTUALLY 0.1 TODAY!!!!!!
Jerry has posted some new pictures on the picture page. Click on the link at the bottom of the page to see them.
Hello Friends!
Jennifer, Morgan’s nurse who was with us during transplant, woke me up this morning to tell me that Morgan has a white count. It was 0.1 today. We have been warned that it could drop back to less than 0.1 and if it does, this is totally normally. However, we are all praying that it just continues to go up and that engraftment will occur very soon.
Morgan seemed to be in a bit more pain today than she has been. This could actually be a good sign. When engraftment starts, it causes bone pain. We are hoping that this new pain means that engraftment is right around the corner. Despite her pain, she was able to be active today. She went to the family room and did crafts and worked with her teacher today. She is so strong.
Morgan had her viral battery test today and she was not very pleased with that. We do not have the results back from it yet. They have said to expect them on Saturday. She had to have this and a chest x-ray because she developed a slight cough. When I say slight, I mean slight. I think she coughed twice the whole day yesterday. But I feel really good knowing that these doctors and nurses are staying on top of these things. The medical care Morgan is getting here is amazing. We have been so blessed to get first rate medical care at Brenner’s and now at Duke. From talking to other families, that is not always the case. Just another example of how the Lord has truly blessed us.
Morgan had to have platelets again today. This has become a daily routine for her. They will give her some blood as soon as her hemoglobin drops below 8 and it was 8.2 today. Speaking of which, my dear co-workers at North Stokes High School are putting together a blood drive in honor of Morgan. This means more to me than I could possibly express. Now, I am asking for all of you who are able, to go to Morgan’s blood drive. It will be sometime in April and I will give you details as things fall into place.
Prayer requests:
1)Ask the Lord to continue to make Morgan’s WHITE CELLS GROW! He has given us a start today, now we just need to pray for His miraculous work to continue.
2)Ask the Lord to bless all aspects of this transplant. Ask Him to give us evidence tomorrow in her test results that she does not have some type of respiratory virus. Ask Him to bless her with a transplant that is free from complications or side effects. And finally, ask Him to use this transplant for His glory by taking any remaining cancer and never ever permitting a relapse.
3)Remember the other children with neuroblastoma. I saw Leah’s mother last night. They have actually moved her to this unit. She did not need to be in PICU anymore, but she needed a bit more care than she would get on the regular unit. There are some empty rooms on 5200 now, so they have temporarily moved her here. She is doing better, but she is still in need of a lot of prayer. Also, pray for her family. They are still in a state of shock. I remember all too clearly how they are feeling.
4)Remember all of the children here on 5200. Reese still needs your prayers.
Remember that you can find links to many of the children that I mention on Morgan’s picture page.
Thanks for checking in with us and for your continued prayers for Morgan and the rest of the family.
In Him,
Allison
Thursday, February 27, 2003 9:00 PM CST
Day +7
Jerry has made some improvements to Morgan’s picture page. He has added links to some of the other children I mention who have cancer or some other life threatening illness. He did a great job, so check it out.
Counts
Hemoglobin 8.7 (low)
Hemocrit 0.26 (low)
Red Cells 2.89 (low)
Platelets 17 (low)
White Cells <0.1 (low)
Hello Friends!
Morgan seemed to be a little stronger today than yesterday. Since she still does not have white cells, I think this is coming totally from Morgan’s determination to start doing things. Her mouth is still hurting quite a bit, so she is not talking. However, she will occasionally color and play with some toys. She is attentive and will respond to yes or no questions with a nod of her head.
She is running a bit of a fever now. I think it is around 101.2. She has been spiking fevers for several days and they are doing another culture on her tonight just to see if they can figure something out. It really does not change things, because she has been on precautionary antibiotics for several days. She has also developed a cough today. It is our speculation that this is a result of the mouth sores and the congestion that accompanies it. She had a chest x-ray today and it came back normal (Praise the Lord). Tomorrow she will have a viral battery. This consists of putting a tube in her nose and taking a sample. That sample is tested to see if there are any bugs hiding out in there. Morgan’s hates having this done, but it is better to be safe than sorry in situations like this.
Morgan had to have yet another unit of platelets this morning. The red count is also dropping fairly quickly so it will not be too much longer before she gets a blood transfusion. Please, if you are able, make an appointment to go give blood.
Please pray for Morgan:
1)Ask the Lord to allow her to avoid any complications or side effects from transplant. Specifically, ask that this viral test she is having tomorrow shows that she does not have any respiratory viruses.
2)Ask for the Lord to permit supernatural growth of her white blood cells. She will begin feeling so much better when this occurs.
3)Please remember to pray for all of the other children with neuroblastoma. Pray extra hard for Sarah. I just learned today that she still has some evidence of tumor, despite just finishing up with transplant. We really need for the Lord to remove all traces of cancer from her body. Here is a link to her site:SARAH'S PAGE
4)Please remember to pray for all of the children here on 5200. I have seen McKenzie’s father up here tonight, which means that she must be back. McKenzie was a patient up here for over 6 months and she had to have three transplants. She was discharged a few weeks ago and seemed to be doing well. I am not sure why they are here, but it is never good to come back. Here is a link to her site:MCKENZIE'S PAGE
Thanks for checking in with us and for your continued prayers for Morgan.
In Him,
Allison
Wednesday, February 26, 2003 7:54 PM CST
Day +6
Counts:
Hemoglobin 9.0 (low)
Hemocrit 0.26 (low)
Red Cells 2.97 (low)
Platelets 19 (low)
White Cells <0.1 (low)
Jerry has posted some new pictures. Click on the link below to see them.
Hello Friends,
Today makes two weeks since we checked into the transplant unit here at Duke. I can honestly say that it has not been the happiest two weeks of my life. But I pray every night that it will mark a new beginning for Morgan and after all of this is over, she will be in good health once again. And I believe the Lord will give us this, because there are so many others out there who are standing with me in praying this prayer.
The other parents were right, the second week is harder than the first. It has been tough witnessing my child feel so bad. It has been hard living our lives in shifts. Jerry and I have not spent more than a few hours together since we were admitted. Not to mention the fact that the four of us have not been together as a family. It has been hard being away from home. This terrible weather has not made things any easier on us. I miss being a mile away from my parents and I miss seeing my new niece. She is almost three weeks old and I have only seen her once for a few minutes. But the purpose of this is not to complain. I know that I am blessed by the Lord each and every day. I am able to maintain hope because of His immense love for me. I know He loves Morgan more than I do and she is always in His loving hands. This is but a short season of our lives and won’t we have a wonderful testimony when it is all said and done?
Morgan remains about the same. It is obvious that she still feels bad, but at least now she is having good moments where there is a spark of her old self. I think she has more pain at night than during the day. I think they may need to turn the morphine up a little at night. The doctors made their rounds today and said that Morgan is still doing well for all she has been through. Her liver functions are getting better every day and her kidneys must be snapping back into action too. She seems to have adequate urine output now and I believe that they have only given her one dose of Lasix and that was on Sunday. The doctor said that he MAY see the beginning of an engraftment rash. The nurse practitioner disagrees and says that it is way too early for that. An engraftment rash means that white cells are beginning to grow. Hopefully, the doctor is right on this one.
Morgan had to have some more platelets today. This could actually be a good sign because a nurse told Jerry that SOME kids will begin to burn platelets when the white cells start growing. She has had three units of platelets since Friday. (This is a good time to remind everyone reading this to make an appointment to go give blood, platelets, or both).
Please keep Morgan in your daily prayers:
1)Ask the Lord to bless every aspect of this transplant. Ask Him to protect her from any complications or side effects. Ask Him to use it for COMPLETE HEALING and to never allow her to relapse.
2)Pray for supernatural growth of those white cells.
3)Please remember all of the kids with neuroblastoma. Tonight I saw Leah’s mom as I was getting off the elevator. Leah is the eight year old girl that had just been diagnosed when we here at Duke for Morgan’s pre-transplant work up. Leah has undergone one round of chemo and has taken a dramatic turn for the worse. She is now in PICU. Please ask the Lord to heal this beautiful little girl.
4)Remember to pray for all of the children here on the transplant unit. Please pray extra hard for Reese, who is still having a lot of trouble. Also, go to his website and offer his mom some words of encouragement. Here is link to his page:REESE'S PAGE
Thanks for your continued prayers and support.
In Him,
Allison
Tuesday, February 25, 2003 7:37 PM CST
Day +5
Counts
Hemoglobin 9.4 (low)
Hemocrit 0.28 (low)
Red Cells 3.11 (low)
Platelets 16 (low)
White Cells <0.1 (low)
Hello Friends!
As you can see from above, there really has not been much of a change in Morgan’s counts, other than everything is going down. This is totally normal and the reason why Morgan (and the other patients here) require so many blood and platelet transfusions. Have I mentioned that it would be a good idea for everyone reading this who is able to go give blood or platelets? I know there is still a shortage of both. I am a frequent platelet donor; I try to give at least two times a month. Since we have been in Durham, the Red Cross has called me about four times to see if I can come in. For obvious reasons, I can not go give right now, but couldn’t some of you who are reading this page be my substitutes for a while?
Morgan still does not feel good. She does however seem more alert today than she has the past two days. She still requires the morphine pump. Her teacher came in today and Morgan did some activities with her. Every Tuesday, there is a group that gets together in the family room to do arts and crafts. Morgan was a bit too tired to attend this today, but maybe she will be up for it next week.
The doctors continue to tell us that Morgan is still progressing exactly as expected. They actually said that it is a good thing that she is able to sleep. Some of the kids are in so much pain that they can not sleep. This is an example of the Lord taking care of Morgan. We can expect engraftment to occur within the next week. The average for engraftment is 10 days. Let’s all pray that Morgan is able to beat the average.
Thanks for all the prayer that are being lifted for Morgan. Please continue to pray that:
1)This transplant will be 100% successful. Ask the Lord to protect her from any and all complications and side effects. Also, ask that He use it to move any cancerous cells that are still within her body and that He NEVER permit the growth of any new ones EVER.
2)Ask Him to allow her to engraft quickly. The sooner she engrafts, the sooner she starts feeling better. So, let’s ask Him to make her WHITE CELLS GROW!
3)Remember to pray for all of the other children with neuroblastoma. Carl is being admitted to the hospital in New York on Thursday to start his stem cell transplant. I can tell you from experience that this family and Carl are in need of a lot of prayer because transplant is a very difficult time. Here is a link to Carl’s page:CARL'S PAGE
4)Remember to pray for all of the children here on 5200. Reese is still in need of a lot of pray. Please go to his site and let his family know that you are praying for them. Here is a link to his page:REESE'S PAGE
Thanks for checking in with us and praying for Morgan.
In Him,
Allison
Monday, February 24, 2003 8:28 PM CST
Day +4
Jerry has posted some new pictures on Morgan’s picture page. (See link at the bottom of this page).
Counts:
Hemoglobin 10.1 (low)
Hemocrit 0.3 (low)
Red cells 3.34 (low)
Platelets 48 (low)
White cells <0.1 (low)
Hello Friends!
Today has not really been that much different from yesterday. Morgan still feels really bad. She has stayed in bed most of the day and has slept a lot. She continues with the morphine pump and we are all looking forward to the day when those white cells start growing so that this pain will subside. The lasix they gave her yesterday did its job and she has not needed another dose since. I also do not think that she has had anymore fevers since yesterday. Jerry stayed with Morgan today and Holden and I stayed at the house.
There really is not much to report (which is really a good thing at this stage in the game). The doctors made their rounds today and said that Morgan is still doing exactly what she is supposed to be doing.
Please continue to lift Morgan up in prayer on a daily basis:
1)Ask our Father to allow this transplant to be totally successful. Ask Him to guide her through it with His loving hand so that she will not suffer from any complications or side effects. Also, plead Morgan’s case and ask Him to never again permit any new cancer cells to begin developing in her body.
2)Ask for Him to make her WHITE CELLS GROW! She is only on Day +4 and this normally happens sometime around Day +10. But, wouldn’t it be wonderful if Morgan's white cells would spring into action now? And we know that our Lord is capable of this.
3)Remember to pray for all of the children with neuroblastoma. Our lives have certainly been touched by the families of these children and we all try to support each other so much. I am thrilled to tell you that Trey had a successful surgery today. Here is a link to his page: TREY'S PAGE
4)Also, remember all of the children here on 5200. Please pray specifically for Reese. His grandmother lives in Lewisville so we have been following their site for quite a while. He did really well through his entire transplant, but he is here now due to a respiratory infection. His mother is the nicest person and she could really use some words of encouragement. Here is a link to his page: REESE'S PAGE
Thanks for checking in with us. Please continue to pray for our family, we know that it is working because we feel the Lord’s hand in our lives everyday.
In Him,
Allison
Sunday, February 23, 2003 8:56 PM CST
Day +3
Hello Friends!
Hemoglobin 11.6 (normal)
Hemocrit 0.33 (normal)
Red Blood Count 3.84 (normal)
Platelets 26 (low)
White Blood Count <0.1 (low)
I think that Morgan has finally hit the wall. Without a doubt, today is the worst I have ever seen her feel. She has basically just laid in the bed all day with her eyes closed. I have asked her several times if she was asleep, and she would nod her head “yes”. She was put on a PCA pump today. This means that she will get a continuous dose of morphine and can press the button if she needs a little bit extra. I am kind of guessing about when to press it, because Morgan is a child who never complains about the way she feels. I can look at her and see her wincing in pain when she swallows, and then I ask her if she is hurting, and she just shakes her head “no”. And she has no interest in pressing the button herself. I have shed a few tears today because it has been agonizing watching her in this condition. She was given some platelets today, but her other counts are okay for now, with the exception of the white count of course. Her urine output decreased quite a bit today, so a diuretic was added to the long list of drugs that she takes. Also, she developed a fever so now she is on another antibiotic. They are running cultures of her blood to see if the fevers are being caused by an infection. Everything that she is going through right now is fairly normal for bone marrow transplant patients.
Please pray for strength for our entire family, because the very difficult days have begun. Also pray that:
1)Morgan’s white counts will come up very quickly. We need for the Lord to allow her to engraft quickly so that all of this pain will go away.
2)The Lord will allow this transplant to be totally successful. Ask that He bring her through it with no complications or side effects and that He would never again allow the cancer to return to her body.
3)Remember to pray for all of the children who are battling this horrible monster. It is a tough disease, but we all know that nothing is stronger than our Lord. Also, remember all of the children here on the transplant unit.
. . . God has said, “Never will I leave you; never will I forsake you". Hebrews 13:5
In Him,
Allison
Saturday, February 22, 2003 7:58 PM CST
Day +2
Hello Friends!
Morgan is still doing exactly what is expected of her. Today her white count dropped down to 0.0. This means that is has no immune system whatsoever. Now is when we should see a downhill slide for her as far as the way she feels. She will basically feel terrible until her whites start coming back up. Today she was put on morphine to alleviate some of her pain. Morgan still does not complain or ever say that she is hurting. She just stopped talking today because of the painful mouth sores. Actually, her mouth looks pretty good. That mouth care that we are forcing her to do must be doing some good. I think the sores are probably worse in her throat. She is receiving small doses of morphine now and the doses will probably increase the closer we get to Day +5.
Holden came back to Durham today. He is as full of energy as ever and seems to have big plans of keeping us on our toes for a while. It is always good to have him with us because it gives our lives more normalcy and he is a nice diversion. Although, now that he is here I won’t have any more mornings of sleeping in until 8:30. (Jerry does not know that I did that this morning, but it sure was nice).
Morgan’s best buddy, Stacy, came and sat with her tonight and Jerry, Holden, and I went out for supper. It was a nice to spend some time together although it was hard to leave with Morgan feeling so bad. Stacy is super with her and we really appreciate the help that she is giving us. Morgan likes her a lot, and Morgan does not always warm up to people very easily. Stacy, if you are reading this THANK YOU!
Please keep Morgan in your prayers in the following ways:
1) Ask the Lord to allow her to come through this whole procedure with no complications or side effects. Ask that He allow this to be successful, so that this nasty cancer would never again return to her body.
2) Ask Him to make those white cells to grow at a supernatural rate so that she can start feeling better soon.
3) Remember to pray for all of the children with neuroblastoma and all the children on 5200. Please remember the family of Jesica, whom I am sure you have heard about on the news. I saw them tonight and needless to say, they appeared to be devastated.
As always, the Barnes family truly thanks you all for your love and support.
In Him,
Allison
Friday, February 21, 2003 7:13 PM CST
Day +1
Last night I was reading the Bible. I read Mark 5:19 which says, “ . . . go home to your family and tell them how much the Lord has done for you, and how the Lord has had mercy on you.” Throughout the last seven months, the Lord has been so good to us and has had such mercy on our family. We have gone to Him so many times in prayer and He has been so faithful in answering them. God is such a loving Father and His love for us is so amazing. Even in our most difficult moments over the last seven months, we have known that the Lord was carrying us and would somehow bring us through. And of course He always did. Morgan still needs a lot of prayer and we know that He is going to continue taking care of us.
Morgan still seems to be doing okay. She has gotten more tired, but she still managed to make it through the day without a nap. She is just as feisty as ever. Wearing the mask is still a touchy subject for her and she refuses to exercise. Today I had to resort to making her just get out of bed for five minute periods. With all the screaming and crying that she does during these “exercise” periods, she actually does a pretty good job of working her lungs. Not to mention the fact that she exerts a great amount of energy trying to climb back into bed, only to be pulled back out again.
Dr. Martin made rounds today. He said that Morgan is still doing what she is supposed to be. Her kidney function is still good and her liver functions are returning to normal. Her liver function should be normal by Wednesday. Her white blood count has not dropped down to 0.0 yet. It will go all the way down and then start climbing back up. It was 0.5 today and should be at 0.0 in a day or so. Her platelet count dropped down to 11 so she did have to get a bag of those today. (And there is still a statewide shortage of blood and platelets -- Hint, Hint).
Morgan’s worst days will probably start around Day +5. The bad days will continue until she engrafts. Her transplanted cells should engraft around Day +10. This means that the new stem cells that were put into her yesterday will begin creating new bone marrow. Please pray that the Lord allow these “bad” days to not be so bad and that engraftment will take place quickly.
Please pray for Morgan:
1)Ask the Lord cause Morgan’s white cells to grow very soon.
2)Ask the Lord to use this transplant for Morgan’s complete healing. Ask Him to spare her from complications or side effects. Also, ask the He never again allow any new cancer cells to begin growing in her body.
3)Please remember all of the other children who are suffering from neuroblastoma as well as all of the children here on 5200. A child was discharged today, which is a good thing but I am sure that another one will be moving in to take his place very soon.
Thanks for all of the prayer and for your concern for our family.
In Him,
Allison
Thursday, February 20, 2003 7:13 PM CST
Day 0 Transplant Day
Hello Friends!
Jerry has posted some new pictures. Click on the link at the bottom of the page to see them.
After seven months of anticipation, the big day finally arrived. As I am sure you know, MORGAN RECEIVED HER TRANSPLANT TODAY. We were told that it would all take place around noon. Then it was pushed back to 2:00. By 3:15, I was pacing the floor and wondering if there had been some type of tragic mistake in the lab. However, at 3:30, the cells were delivered and transfused into Morgan.
The whole process was over by 4:15. It was really anticlimactic. The bag contained less about ¼ of a cup of material and looked like really watery tomato juice. Morgan was monitored carefully during the transfusion to make sure that her blood pressure was not rising and her heart rate lowering. Morgan’s blood pressure did go up, but this did not cause any alarm. Morgan’s blood pressure normally runs low, so it only came up to normal. Her temperature also rose to 100.1, but on the transplant unit that is not even considered a fever.
We were prepared for the smell of transplant. We had been warned that the room would start smelling like creamed corn. It did, and now Morgan smells like creamed corn. This will last for 12 to 24 hours. We chewed Big Red gum so that smell did not get to us that bad. I think it got to Morgan a bit, because she got sick. We gave her some Altoids and that seemed to help her.
Morgan is doing fine now. She is sitting in bed watching videos and eating a hotdog bun. I think that buns are her new favorite food because they do not irritate her mouth sores. They are almost like a security blanket for her. She will take one and hold it for a while nibbling on it. It is calories, so we are not complaining. Speaking of calories, Morgan was started on TPN tonight. This means that she will get all of the nutrition she needs through her IV.
Thanks for praying for Morgan today. Your prayers certainly helped to make the transplant procedure easy. Please continue to pray:
1)Please ask our Lord to stimulate the growth of her white blood cells. Normally it will take about 10 days for her stem cells that she received today to engraft. Ask Him to generate growth quickly and make this transplant a 100% success and never allow the cancer cells to come back.
2)Please ask Him to continue to allow the entire process of go by without complications or side effects.
3)Please remember the other children with neuroblastoma – Sarah, Henry, Jacob, Harrison, Trey, Taylor, Leah, Brittany, Rayshawn, Carl and Sophie. The list of children with this horrible disease seems to be growing every day and that is truly a shame. And don’t forget to lift up all of the children here on 5200.
As always, thank you for your prayers. We can feel them carrying us. Please continue to pray and check back in with us tomorrow for another update.
In Him,
Allison
Wednesday, February 19, 2003 8:43 PM CST
Day –1
Jerry has posted some new pictures. Click on the link to her photo page below to see them!
Hello Friends,
Our first week on the BMT Unit has come to an end. I am amazed at how quickly it has passed us by. I certainly hope that the rest of our time here goes by this fast.
Morgan is still doing okay, but it is obvious that she does not feel well. The mouth sores have appeared and they are not that bad yet, but they will probably be bad before all is said and done. She has not vomited as much today and the diarrhea seems to have subsided for a while too. We want to stress to everyone that the worst is not over. From what we have gathered talking with other parents here, the second week is much harder than the first week.
We are proud of Morgan. She is still attempting to do things even though she feels really bad. She is trying to eat, but the mouth sores are making it difficult. Today she asked for her favorite, bacon, and a hotdog. Dr. Martin told us that the chemo will do strange things to her taste buds. She will have cravings for food, and then when she gets them, she will not eat them because they do not taste good to her. She has lost two pounds since we have been here. Tomorrow they will start IV nutrition (TPN). It is very normal to start TPN on transplant day and her weight loss is very normal.
Grandma and Paw-Paw came to pick up Holden today. He went back to Lewisville to make it possible for Jerry and me to both be here for Transplant Day. Holden’s Great-Aunt Becky also came along for the trip and to see the vacation house. Holden was happy to see his grandparents and when I called tonight to check on him he seemed very happy. I think he was probably getting a bit bored in the vacation house and it is good for him to get a change of scenery.
Tomorrow is Morgan’s big day. From what I understand, they will deliver the stem cells sometime around noon. Please say a short prayer for Morgan tomorrow around lunchtime. Our prayer needs are:
1)Please ask the Lord to bless these stem cells. Ask Him to make them strong, healthy, and capable of engrafting and creating new marrow very quickly.
2)Ask the Lord to bless the entire procedure for Morgan. Ask Him to use it for His glory to completely restore her to the healthy, vibrant child she used to be. Ask Him to bring her through this transplant safely with no complications or side effects.
3)Remember to pray for the other kids with neuroblastoma: Sarah, Henry, Jacob, Harrison, Trey, Taylor, Cam, Leah, Brittany and all of the others. And please remember the other children who are here on the transplant unit.
Of course, I will do another update tomorrow night and let everyone know how the transplant goes.
In Him,
Allison
Tuesday, February 18, 2003 8:46 PM CST
Day –2
Hello Friends!
The weather finally warmed up and I made it to the hospital today. It was good to see Morgan again and obvious that Jerry and Holden were happy to be reunited. When I walked into the room, I was shocked by how good Morgan looks. Chemo certainly does weird things – she now has the most beautiful tan. She looks like she has spent a few days at the beach (although I am sure she does not feel like she has been on a vacation). This last round of chemo has not started doing a number on her hair yet, so now she has visible eyelashes and just a fuzz of hair. The eyelashes make those beautiful green eyes of hers simply glow. I am sure it will not be long before she loses them again.
Morgan and I had a nice day together. We got into a major mother/daughter scuffle because she did not want to wear her mask when she went out in the hall. After transplant, Morgan will be required to wear one so I am trying to get her in the habit of wearing it. She stood by the door and screamed and cried and refused to give in. So did I but without the screaming and yelling part. I eventually won and she exited the room in her mask. She was not happy.
I think Morgan has won the heart of one of the older patients. He has seen her out walking the halls. Jennifer, our nurse, reported back to me that when Morgan was crying over the mask issue he wanted to know who was being mean to that cute little girl.
She is still getting sick a lot and now we are dealing with diarrhea. That is certainly no fun, but we knew it was coming. She has good moments and not so good moments. I think she is doing a great job and I am certainly impressed by her strength and by the fact that she never complains.
Please continue to pray for Morgan. Please ask our Lord to:
1) Use this transplant for His glory. Ask Him to bring her through it with no complications or side effects and allow Morgan to be totally free of disease (forever) after it is all over.
2) Bless her stem cells. Ask Him to not allow one single unhealthy cell to be put back into her. Also ask that He give these cells supernatural strength so that they can begin bringing about recovery at the very moment they are put back into her body.
3) Restore health to all of the children with this horrible disease: Sarah, Henry, Jacob, Harrison, Trey, Taylor, Cam, Rayshawn, Leah, and Brittany. And to bless all of the children on 5200.
Thanks for continually praying for Morgan. I will do another update tomorrow night.
In Him,
Allison
Monday, February 17, 2003 8:36 PM CST
Day –3
Hello Friends!
I woke up this morning, got ready, got Holden ready, and fixed the two of us breakfast. Then, I called Jerry and told him that I was watching the news and would leave for the hospital to relieve him as soon as the temperature rose about freezing. Well, needless to say I have not left the vacation house at all today. The temperature hovered around 26 degrees all day and I did not want to risk getting out on the roads. Therefore, Holden and I are still iced in at the vacation house. Jerry is still stranded at the hospital. Hopefully, tomorrow it will warm up some and I will be able to relieve him. I am sure he is ready to get away from the hospital and I know I am ready to get out of the house. A change will do us all some good.
But, we are very thankful to the Lord that our power has stayed on for the duration of this ice storm. I do not know what we would have done without it!
Morgan continues to slow down a little bit each day. Of course, I did not see her today but Jerry said that she looks tired. It has also become a struggle to get her out in the hall to get her to do her exercise. She is getting sick more frequently. Dr. Martin came by today and said that she is doing exactly what is expected at this point. Her kidney function is good. I assume this means that she is no longer retaining fluid. Her liver function is now abnormal. This means that it is abnormal compared to all of us who are not undergoing a bone marrow transplant. For BMT patients, it is normal for the liver function to be abnormal (raise your hand if I have thoroughly confused you?) She had to have the first of many blood transfusions last night. (Well, not her really her first, but the first one she has had since she has been admitted). Her hemoglobin was low so they fixed her right up.
This is a good time for me to remind everyone who is able to go give blood. You have probably heard that the blood supply is low in the entire nation. There are even some places where certain surgeries are being cancelled because there is not enough blood on supply. Morgan will need lots and lots of transfusions during this process. As will all of the children on 5200. As will all of the patients in this country who are undergoing BMT’s and even chemotherapy. Please go give blood. While your donation may not help Morgan directly, it will help someone.
Oh yeah, Morgan’s chemotherapy was stopped around 11:00 this morning. As I said yesterday, let us all go to our Lord in agreement that Morgan will never again have to endure any more chemotherapy. She did get a little bit of freedom from her IV pole today. When the chemo stopped, they unhooked her for about 25 minutes. This was a special treat. I am sure it gets tiresome pulling around a huge pole everywhere. What am I saying – I know it is tedious, because Jerry and I are always the ones pulling the poles.
Today when you pray, ask our Lord to:
1) Allow this to be Morgan's final round of chemo ever. Ask Him to use this transplant to give her total and complete healing and never permit this foul disease to return to her body again.
2) Ask for His blessings on Morgan’s stem cells. Ask Him to make each one of them healthy and perfect for transplant.
3) Please remember the other children with neuroblastoma – Sarah, Henry, Jake (especially as he heads to NY on Monday for another surgery), Harrison, Rayshawn, Trey, Taylor, Leah, Brittany, and countless other. And don’t forget the children on 5200, they are all in need of prayer to make it through the difficult days of transplant.
Thanks for checking in on Morgan. Please continue to keep her and the other children in your prayers. Look for another update tomorrow.
In Him,
Allison
Sunday, February 16, 2003 9:00 PM CST
Day –4
Hello Friends!
I just realized that I have never explained my countdown of days that is listed at the top of all my entries. Sometimes I forget that not everyone is into transplant lingo. So I guess I will explain, the day that Morgan receives her transplant is DAY 0. Every day before this day is a t minus day and everything after it is a positive day. (I certainly hope that we have lots and lots of positive days). On Day +1825, our family will probably be able to take our first sigh of relief. (Gee, only 1830 to go).
Dr. Driscoll checked on Morgan today and said that she is doing exactly as she needs to be doing. He did caution us however, that we are still in the good stage. We are going to see a lot of bad days before we are able to see good days again.
As for right now, Morgan is doing okay. She is getting sicker and sicker everyday. There are more episodes of vomiting and one can see that she is starting to slow down a little bit each day. We are happy that she has about 12 hours to go and the chemo will be turned off. Please join us in praying that this will be the last 12 hours of chemo that she ever has to endure. Ask the Lord to grant Morgan a long and happy life that is free from cancer.
It is getting harder and harder to inspire Morgan to get out into the hall and do her exercise. I have got to hand it to Jerry though, he creatively got her out there today. She has these little Rug Rats toys that came from the Dollar Store. We used them as incentives to try to teach her to swallow pills, but that is another story. He told Morgan that Angelica, Tommy, Chuckie, Dill, etc. were going out in the hall to play hide-n-seek. He took them out and hid them, and Morgan went out searching for them. I have always said that Jerry is a good husband, but a wonderful father. This is just another example of why!
Holden and I are iced in at the vacation house. We have really enjoyed our time together the last two days. I am supposed to be pulling the night shift at the hospital but I did not want to risk putting my son’s life in jeopardy on the roads and I know that Morgan is in the loving hands of her father.
My parents are suffering from Holden withdrawal. Mom has called several times and told me that if we needed for him to go back to Lewisville for a while, she would come pick him up. He is such a sweet little guy! A cute Holden story – Today we flipped by the Daytona 500 just as Ryan Newman’s car was doing a somersault. Holden very seriously looked at the screen and then looked at me and said “UH OH”. I thought it was a keen observation for a 16 month old.
Today, please remember to praise the Lord for all of the blessings you have in your life. This is such an important part of our prayer lives. Even on my worst days, I can find five wonderful things that the Lord has done for me. Most of the time, there are many more. After you have praised the Lord, ask him to:
1) Be with Morgan each and every moment of this transplant. Please ask Him to take care of her and not let her suffer from any complications or side effects. And ask that He use this to CURE her of this foul disease and that it would never return again.
2) Ask for His blessings on Morgan’s stem cells. Ask Him to make each one of them healthy and perfect for transplant.
3) Please remember the other children with neuroblastoma – Sarah, Henry, Jake (especially as he heads to NY on Monday for another surgery), Harrison, Rayshawn, Trey, Taylor, Leah, Brittany, and countless other. And don’t forget the children on 5200, they are all in need of prayer to make it through the difficult days of transplant.
Thanks for your prayers and for all the love you have shown to Morgan and our family. I will post another update tomorrow.
In Him,
Allison
Saturday, February 15, 2003 8:03 PM CST
Day –5
Hello Friends!
I do not think I have that much to report today. I spent the day at the vacation house with Holden and I have only been here at the hospital for about 40 minutes. The only pertinent information Jerry gave me was that Morgan has started retaining a little more fluid than they would like, so they have added another drug to take care of that. Also, the episodes of vomiting are increasing ever so slightly. Otherwise, things are moving along right on schedule.
The big news of course is the ice storm that has been predicted. I think we should all pray that this does not happen. It would make our lives even more hectic than they already are. I would not mind being camped out at the hospital if the roads were impassable. However, the vacation house does not have any alternative heating method. So if the storm, causes a power outage Jerry and Holden would be out in the cold (literally). We are not exactly in a situation where we could just take refuge at a friend’s house, because we do not know anyone who could take us in. Our lives will just be a lot easier if the temperature stays high enough so that we do not get any frozen precipitation.
Jerry has added a link to the bottom of the page. Click on it if you want to see more pictures of Morgan in her new life here on 5200.
And now for our daily prayer requests:
1)Please pray that the Lord will protect Morgan at all times during this transplant. Please ask him to allow her to make it through the entire process with no serious complications or side effects.
2)Ask for the Lord’s blessings on Morgan’s stem cells. Ask Him to make them perfect and healthy and to give them the ability to give her complete healing with no chance of this horrible disease ever coming back.
3)Finally, remember the other children with neuroblastoma (Sarah, Henry, Jacob, Harrison, Trey, Rayshawn, Cam, Taylor, Leah). There is another girl here on the unit with NB. Her name is Brittany and she is 13 years old. She is such a sweet girl. As soon as Morgan arrived, Brittany greeted Morgan with a Valentine Card and some chocolate. And please remember to pray for all of the children here on the transplant unit. They are all fighting so hard.
As always, our family thanks you for your care and concern. Most of all, we thank you for your prayers!
In Him,
Allison
Friday, February 14, 2003 7:27 PM CST
Day –6
Well, here we are at the end of another day on the transplant unit. Morgan is still doing pretty well. I can tell she is starting to slow down a bit, but that is to be expected. The only thing major that happened today was that her blood cultures have tested positive for a staf infection. This is a pretty common thing around here. They have put her on medicine for it, and of course Morgan had a reaction to the medicine. For those of you who have been following Morgan’s story for a while, you know that this is a fairly common occurrence. The reaction made her turn all red and itchy. Fortunately, benedryl cleared it right up. The benedryl knocked her out. I let her sleep for about an hour or so. Then I woke her up to take her bath and to do mouth care. This brought about her first episode of vomiting. She recovered quickly and after a bath, I took her out in the hall to get her last round of exercise for the day. After exercise, we went into the family lounge and read some books. Now she is relaxing in bed watching “Lilo and Stitch” (thanks to our kind neighbors in 5214 who loaned it to us).
Morgan has already started losing weight. The nutritionist told us today that we need to start supplementing her diet again with Pediasure. She has pretty much been living off of it since July. We stopped giving it to her when we were admitted. We started again today and she will probably take it as long as she can tolerate it, then we will switch over to TPN (IV nutrition).
We do have a praise report. We learned yesterday that Morgan is continuing to develop normally despite everything that she has been through the last six months. Yesterday, she was assessed by a speech therapist, a physical therapist, and an occupational therapist. They did these assessments in order to determine what type of services she will need during her stay on the unit. Her speech is above average and physically she is doing fine too. Therefore, she will not receive services in these two areas. However, she does not hold a pencil or scissors correctly so she will receive services from the occupational therapist once a week. I am thinking – with all she has going on, is this really that big of a deal. However, it will give her something to do and Morgan will probably enjoy doing it. Miss Tonjua – if you are reading this, they have already said that they are going to get Morgan to string some beads and you know better than anyone how she feels about this!
My parents brought Holden to Durham today. It will be so nice to have him here. I think he missed his daddy more than me. When he saw his daddy today for the first time, he had bunches of hugs and kisses for him that he did not have for me. I must say that I was a bit jealous. They are in the vacation house tonight having father/son bonding and Morgan and I are camped out at the hospital.
Please continue to keep Morgan in your prayers.
1)Please pray for no complications or side effects from treatment.
2)Pray that only healthy cells will be transplanted back into her body and these cells will allow her to live a long and healthy life without ever relapsing.
3)Pray for the other children with neuroblastoma – Sarah (she came by for a quick visit today and she is doing so well that they are going to let her leave Durham tomorrow), Henry, Jacob, Harrison, Trey, Cam, Taylor, and Leah. Also remember the other children here on 5200.
Thanks for checking in and for praying for Morgan. We will let you know what is going on tomorrow.
In Him, Allison
Thursday, February 13, 2003 8:10 PM CST
Day –7
Hello Friends!
The chemotherapy that Morgan receives prior to her stem cell rescue was started this morning around 10:00. The good news is that Morgan is still feeling great. We have been out in the halls getting exercise several times today. She really likes the nurses so far and she is even letting us do her mouth care. The bad news is that it will not be long before she starts feeling the effects of these drugs. When they start hitting, they will hit very very hard. We are trying to enjoy our good days while we can, knowing that some tough times are ahead.
My first night with Morgan was fairly uneventful. She slept well; I just never could drift off. There was nothing that kept me awake, I guess my head was just too full of thoughts. It was after 1:00 this morning before I fell asleep. I was up before 7:00 and just could not go back to sleep. Tonight I am going to the vacation house to prepare for Holden’s arrival.
Tonight Jerry and I were treated to a romantic dinner. The unit sponsored it for the parents of the children on 5200. We were kind of worried that Morgan would not let us leave. However, tonight was the night she met her best buddy. Morgan’s best buddy is here to help our family during the duration of our stay in Durham. Fortunately, Morgan and Stacy hit it off immediately. Stacy is a senior here at Duke, and Morgan really likes her. I do not think she even missed us while we were gone. The dinner was great because it gave us some time together, as well as gave us the opportunity to meet some other parents. The support system around here is phenomenal. They even took our picture and are going to frame it for us – just like the prom!
Well, so far this is all there is to report. Today was a good day, but as I have said we will have some rough times ahead of us. Please pray that:
1) Morgan will not suffer from any complications or side effects as a result of transplant.
2) The Lord will bless Morgan’s stem cells and make them perfect to be put back into her body.
3) Please pray for the other children with neuroblastoma – Sarah, Henry, Jacob, Harrison, Trey, Cam, Taylor, and Leah. Also, remember the other children here on the transplant unit.
As always, thanks for the care and concern that you are showing for Morgan. Thanks most of all for remembering her in your prayers, as you know we are truly depending on prayers to save her!
In Him,
Allison
Wednesday, February 12, 2003 8:56 PM CST
Day –8
CHECK OUT THE NEW PICTURES!
Hello Everyone!
We have arrived on the transplant unit. We checked in around 2:30 this afternoon. So far, Morgan has thoroughly enjoyed the place. When we first got here, she went out in the hall and rode just about all of the riding toys that they have. Then, a volunteer came into her room to do art with her. Of course, Morgan loved this. They worked on decorating Morgan’s door. It now has some original artwork by Morgan on it, as well as some pictures of Morgan, Holden and Smith.
I am spending the night here on the unit tonight. I went home to prepare for my night while Jerry sat with Morgan. They basically walked the halls the entire time I was gone. It is now 9:30 and Morgan is relaxing in bed watching a Bear in the Big Blue House video.
As I am typing this, I am wondering at what point she will finally close her eyes and go to sleep. I am totally exhausted and hoping that sleep comes early for both of us. Morgan however appears that she could go on all night long. I think when this video ends, I will declare lights out and pray that it works.
We are so thankful that the Lord has brought us this far in our journey. He has been with us each and every step of the way and we know that He will continue to carry us the rest of the way. Jerry and I have learned so much about the power of prayer during this ordeal. Our Father’s love for us is so amazing and He faithfully comes to our rescue when we are in times of trouble.
We are still asking for everyone to pray for Morgan. This transplant will be difficult on all of us, so we need for everyone to be lifting her up in prayer. Please pray that:
1)Morgan will make it through this transplant with no complications and will suffer no side effects from the treatment.
2)Please continue to ask for the Lord’s blessings on the stem cells that will be transplanted into Morgan on the 20th. Please ask that He not allow any unhealthy cells to be put back into her body.
3)Please pray for the other children who are suffering from neuroblastoma. Please remember Sarah, Henry, Jacob, Harrison, Trey, Cam, and Taylor. Also, there is another child that I need for you to prayer for. Her name is Leah. We met her family when we came to Duke a few weeks ago to prepare for transplant. At that time, the doctors were testing Leah to determine if she had neuroblastoma. We saw her mother today as we were stepping off of the elevator bringing Morgan to the unit. Unfortunately, this beautiful 8 year old child, also has this horrible disease. Please remember Leah and her family in your prayers.
Thanks so much for checking in with us and for your continued love and support. I will let you know what is going on tomorrow.
In Him,
Allison
Monday, February 10, 2003 12:37 AM CST
Hello Friends!
I am finally able to report the news that we have been waiting to hear! WE ARE HEADED TO TRANSPLANT! I received the phone call about an hour ago. We are supposed to report to Duke between 2:00 and 3:00 on Wednesday.
I think our schedule will be as follows:
February 12 – admission
February 13 through 16 – 96 straight hours of chemotherapy
February 17 through 19 – rest
February 20 – STEM CELL TRANSPLANT
When I received the call, the transplant coordinator told me that Morgan has a slight sinus infection that showed up on one of her CT scans. The plan is to start her on amoxicillian now to take care of that. I will call the doctors at Wake in a few minutes to make sure we have a prescription.
Morgan is really in need of prayer right now. Please pray the following things for us:
1)Please pray for the Lord to heal Morgan’s sinus infection quickly so that it does not cause any delays in transplant.
2)Please pray for the Lord to prepare Morgan’s body for this transplant. Ask Him to allow her to get through it with no complications or side effects.
3)Ask for the Lord to bless Morgan’s stem cells. As we have said many times, we certainly do not want any cancerous cells to be put back into Morgan’s body.
4)Ask for the Lord to watch over Holden during the next few days. He will not be going to Duke with us immediately because we need some time to get settled. He will be spending some time with Grandma and Paw-Paw. Please ask for the Lord to keep him safe and happy over the next few days. Also, ask the Lord to give my parents the energy they will need to keep up with him.
5)Please do not forget to pray for the other children with neuroblastoma. Please lift up Sarah, Henry, Jacob, Harrison, Trey, Cam, and Taylor on a daily basis.
I will try to do another update on Wednesday after we get settled in. Once the transplant has gotten underway, I will try to do an update every day.
Thanks for checking in with us and for you continued prayers for Morgan and the rest of our family.
Much Love, Allison
Friday, February 7, 2003 3:47 PM CST
Hello Friends!
I am doing this update to let you know that we are still in Lewisville. Duke did not ever call this week, so I paged Carmen, the transplant coordinator, today. Actually, I had to page her twice before she ever called back, but who's counting?
It appears as if the waiting game will continue. We were originally given the target date of February 10th (Monday). However, we were told today that it will not be Monday. It may be one day next week, and it may not.
Needless to say, today has been a very frustrating day for me. I realize that there are other children in need of transplants out there, but it is hard to keep that in perspective. I guess the frustrating part of it is that when we were at Duke last week they said that there were one or two other children ahead of us to get in. Since our trip, I know of at least four kids who have been discharged, and yet another who is supposed to be discharged on Sunday. I guess there is some sort of protcol that is in place for getting these kids into transplant, but I don't understand why they would tell me something that just is not true! I know that Morgan's day is coming, but I am just so ready to get it over with. This whole process is really stressing me out and I have had a headache since about Tuesday.
On a much happier note -- we have had an addition to our extended family. Our niece and cousin, Rachel Elizabeth Morgan, was born today. Morgan is excited to finally get her girl cousin. Rachel weighed in at 8 pounds and 9 ounces and both mother and baby are doing fine. We have not seen her yet, but we heard that she looks a lot like Smith. We have also heard that Smith believes it is the official job of the big brother to rub his new little sister's head constantly. Congratulations Mike, Ruffin, and Smith!
Please pray for us this week. Please pray that I do not go completely insane waiting for this transplant to get underway. Seriously, our prayer needs for this week are:
1) For the Lord to grant me the patience to understand that everything happens in His time. Please ask Him to give our family a spirit of peace that Morgan will go into transplant at the exact moment He deems it necessary for her to go.
2) Pray for the Lord to prepare Morgan's body for the transplant. Ask Him to keep her from getting any kind of illness which would cause further delays. Also, ask Him to prepare her so that she will not suffer from any complications while she is in transplant.
3) Pray for the Lord to cleanse Morgan's stem cells. Ask that He not permit any unhealthy cells to go back into her body.
4) Plead Morgan's case to the Lord and ask Him to never again permit any new cancerous cells to grow in her body. As far as we can tell, she currently has no evidence of disease. We need for the Lord to allow her to stay this way.
5) Please remember the other children with neuroblastoma: Sarah, Henry, Jacob, Harrison, Rayshawn, Trey, Taylor, and Cam. Please pray extra hard for Harrison. His family and his doctors believed that his bone marrow was clean, but they just found out that there is still neuroblastoma in the bone marrow.
Also, I have added a link to the bottom of this page. Click on it to check out Morgan's quilt!
I will do another update when there is something to report. Thanks so much for checking in with us again and for the prayers that you are saying for our family.
Love,
Allison
Monday, February 3, 2003 8:06 PM CST
Hello Friends!
No, I am not updating to tell everyone that we are on our way to Durham. I wish I was, but I am not. For those of you who know me well, you may know that I am kind of impatient. Not impatient in terms of getting angry about waiting in lines and things like that. But, I am the kind of person that once I get something on my mind, I do it without waiting or hesitation. The Lord is certainly teaching me a lesson in the waiting game we are playing. This is just an example of one of the things in life that needs to be turned over to the Lord. We must trust in Him to always do the best for us in our lives.
The reason I am updating is to let everyone know about our day. It kind of got off to a rough start. Morgan woke up this morning vomiting and she felt hot. I took her temperature and it was 101.8. This is not a good thing. I called the hospital and they told me to bring her in to the clinic. When I got there, she had no more fever and she seemed to be feeling pretty good. They kept us a while for observation and took her temperature several times. They took blood to run cultures and then they sent us home. Praise the Lord.
The main concern right now is that she may have an infection in her line. It does not look like there is an infection in it, but we will not know for sure until the blood cultures have had a chance to run for about 24 hours. Please put this item on the top of your prayer list, because we do not want anything to happen that would delay transplant.
Morgan's prayer needs are:
1) Pray that there is no infection in her central line. Ask for the Lord to protect that line as only He can do.
2) Pray that we will get the phone call to come to Durham very soon. We are both so anxious to get this started.
3) Pray for the Lord to bless Morgan's stem cells. Ask Him to allow only healthy cells to be placed back into her body.
4) Ask the Lord to grant Morgan a transplant that is totally free from complications. Please ask that He not allow her to suffer from any of the side effects that are associated with transplant.
5) Pray for the Lord to bless the doctor's who are trying to find a cure for this horrible disease. Please ask the Lord to lead them to better treatments very soon so that the lives of all the children can be saved. Please ask for complete healing for Sarah, Henry, Jacob, Harrison, Trey, Rayshawn, Cam, and Taylor (this is a little boy whose parents recently signed Morgan's page).
Once again, thanks for checking in with us and praying for Morgan. Prayer is the only thing that will save her so we need a lot of it. I will do another update in about a week, or earlier if anything important happens.
Love to you all -- Allison
Friday, January 31, 2003 at 04:34 PM (CST)
CHECK OUT THE NEW PICTURE IN THE PHOTO ALBUM!
Whew!!! We are finally at home relaxing after a very busy week.
We left for Durham Monday after Morgan’s doctor’s appointments. Our first appointment was Tuesday morning at 8:15. This got the ball rolling. We had consults with the insurance coordinator, the transplant coordinator, the social worker, and the people from the family support program. Then we met with a nurse practitioner for Morgan to have a physical and to update her medical history. We took a tour of the transplant unit and then met with Dr. Driscoll. He handles all of the neuroblastoma patients that come to the unit for transplant. At this time, we signed the consent forms necessary for them to proceed with transplant. The only other thing we did on Tuesday was go to clinic for blood draws. It was a busy day.
On Wednesday, Morgan had to have a test to evaluate her kidney function. This involved being injected with a medicine and then her blood was drawn after one hour and again after three hours to see how well her kidneys were filtering out the medicine. She also had to have a respiratory viral battery. This involved putting a tube in her nose and extracting a sample. Morgan absolutely hated this, as we all would I believe. Then, she had a test of her lung function. The last thing Morgan had to do on Wednesday was to be injected with a radioactive isotope for her scan on Thursday.
On Thursday, Morgan started off the day with a developmental evaluation then she had her MIBG scan. We received a surprise on Thursday, and not a very good surprise. The people in nuclear medicine, where she had her scan, told us that we needed to go back up to the clinic before we left Durham. When we got to clinic, we were told that Morgan needed a blood transfusion before we headed home. Morgan’s hemoglobin had dropped to 7.2. Her red cells were growing, but Dr. Driscoll just wanted to make sure that she headed into surgery on Friday morning with a full tank. Therefore, this delayed our departure and we did not arrive home on Thursday until 10:00 p.m.
We had to be at Baptist Hospital on Friday morning at 6:00. Morgan had her central line placed with no complications and we were heading home by 9:30. You certainly would not know that Morgan had surgery this morning. She has been running around, playing and eating. She has been in good spirits and very happy to be reunited with her brother. She missed him so much that she wanted to buy him a present while we were gone. I took her into the gift shop and she picked out a silver PT cruiser (just like Grandma and Paw-Paw’s).
We tried to let Morgan do some fun stuff while we were in Durham. On Tuesday, we took her to see the Wild Thornberry’s movie. This worked out great because we were the only three people in the theater. On Wednesday, we took her to a Japanese steak house. She was not interested in the food at all, but she really did enjoy watching the guy cook.
Now we are playing the waiting game. Morgan will have the next bed that opens up on the transplant unit at Duke. Her tentative date for admission is February 10. However, we could go sooner or we could go later. Hopefully, while we are waiting we will be able to get some rest and just relax a little bit.
Oh yeah, I did forget one important piece of information. All of the results for Morgan’s tests that she had at Duke are not back yet. But the ones that did come back, are all normal. THIS INCLUDES HER MIBG SCAN!! This means that as of this very moment, there is no evidence of disease in Morgan’s body. (We are still waiting for the results of her bone marrow test that she had today, but we are not expecting any surprises since the bone marrow was clear back in November and the chemo has worked so weel in all of the other parts of her body). This does not mean that she will not have to go to transplant or anything. It just means that she will be going into transplant with no detectable disease. If we were to stop treatment today, there is a 70% chance that the cancer would come back. If we keep going with treatment, the chance of the cancer coming back goes down. So of course, we are going to continue with treatment.
Our prayer needs for this week are:
1)Please pray that the Lord will send us to Duke at the perfect moment for this disease to be taken from Morgan’s body forever.
2)Please ask Him to bless her stem cells and to remove any unhealthy cells that are still in the bunch. They have been tested, but of course it is impossible to test each and every cell.
3)Please ask for the Lord’s blessings on Morgan’s transplant. This will be a very tough procedure. We need for the Lord to guard Morgan from any serious complications. Also, we need Him to protect her from any side effects that come with transplant.
4)Please ask for the Lord to protect Morgan’s central line from any infections. These lines have to meticulously cleaned and cared for to prevent infections. Ask Him to guard her from anything negative.
5)Please continue to pray for the other children with neuroblastoma. Ask for the Lord’s healing on Sarah (she has been discharged from the transplant unit, we saw her and she seems to be doing well), Henry (he is back in NY getting his second antibody treatment), Jacob (he has a surgery in NY scheduled sometime soon), Harrison (he is doing well after a very serious surgery in NY), Trey (he just finished his fifth round of chemo), Rayshawn (he is getting ready to move back home after transplant), and Cam.
I will do another update in a week or so. Of course, I will let everyone know when we receive that phone call telling us to come to Durham. May the Lord bless you all!
Saturday, January 25, 2003 at 05:35 PM (CST)
Hello Friends!
We hope this update finds each of you enjoying a relaxing weekend. That is certainly what we are doing. We are thrilled to be home and away from the hospital. There is not much going on here, but I thought I would do an update anyway. It is always good news when we do not have a lot to report.
Morgan went to clinic yesterday. Her blood counts were good and she seems to have recovered from the last round of chemo. On Monday, we will see Dr. Letton and on Friday he will put in her central line. We will be spending the rest of next week in Durham doing all of the preparations for transplant. I can not believe we are finally here. I remember when she was diagnosed, I could not even begin to see a light at the end of the tunnel. But here we are, all finished with chemo and ready to head into transplant.
Morgan is starting to make plans for when she is “all better”. She is keeping a list of the things she wants to do and is telling just about everyone she meets. She wants to go see Mickey Mouse (which is her Make-a-Wish trip), go to Blue’s Birthday Party (we have heard this is coming to the Greensboro coliseum in July), go to Chuck E. Cheese (of course), go the beach with Grandma and Paw-Paw, and go out in the yard and do some gardening (I am not sure where this one came from). Her list makes us very happy because we feel like it will offer her an incentive for doing well in transplant.
Of course, Morgan still needs a lot of prayer. Neuroblastoma is a very nasty disease and the only way she will survive it is for the Lord to provide her with complete healing. As we have said many times, we are putting all of our faith in Him and we thank the Lord every night for all of the blessings that have been sent our way. When you are in prayer this week, please remember Morgan and the rest of our family in the following ways:
1)Ask that He continue giving us great news for all of Morgan’s tests. She will have a MIBG scan at Duke. This particular scan will detect any cancerous cells that are still in her body. She will also have another bone marrow test on Friday when she has surgery. Ask the Lord to give us evidence that all of these nasty cells have been removed from her body.
2)Ask Him to send her to Duke as quickly as possible. Getting started just means that we are one step closer to being finished. Ask Him to bless every aspect of her transplant. We need for our Lord to cleanse her stem cells to make sure that no unhealthy cells will be placed back into her body. And, we need for the Lord to provide Morgan with a transplant that is totally free from complication.
3)Ask Him to be with her during surgery on Friday. This is a fairly simple procedure, but it is still nice knowing that she has the Lord’s protection while it is going on.
4)Ask Him to protect us next week in during our trip to Durham. Holden will be staying at home with Grandma and Paw-Paw and some of my friends. Please ask the Lord to keep him safe and give him contentment during our time of separation.
5)Ask Him to touch and heal all of the other children who are fighting this disease – Sarah, Henry, Jacob, Harrison, Trey, Rashawn, and Cam.
I will try to do another update on Thursday after we come home from Durham. Thanks so much for checking in with us and for all of the prayers that are being lifted up on Morgan’s behalf.
Wednesday, January 22, 2003 at 08:37 PM (CST)
Hello Dear Friends,
I wanted to do an update to let everyone know that we are finally home. This was our longest stay in the hospital other than our first visit when Morgan was initially diagnosed. We are all happy to be home together. Morgan and Holden are so happy to see each other that they have not really been fighting much tonight. They have been playing together and enjoying each other’s company. I am sure this will be short lived and tomorrow will begin another day of brotherly/sisterly love.
We have so many reasons to praise the Lord! He has been so good to us through all of this. This whole experience is strengthening my and Jerry’s prayer life in such dramatic ways. I think David Jeremiah once said that people do not learn how to pray until they have a true reason for prayer. I think these words are very true.
As many of you know, we had a very long night last night. It was a night filled with much worry and despair. During what I believed was a routine eye exam, we were told that there were abnormalities in Morgan’s right optic nerve. At this time, we knew it was possible that this meant the growth of a new tumor either in Morgan’s brain or in her eye. Many people went to the Lord in prayer regarding this issue and today we were blessed with the news that yes there is a problem with Morgan eye, but it is not a tumor. Praise be to God! Thanks to everyone who lifted Morgan in prayer regarding this issue. I also want to thank my parents, our pastor, and my dear friends from church who came to our house last night to be with Jerry and to the hospital to be with me in this time of extreme worry for the two of us. Also, thanks to Jerry’s co-workers who emailed many many people and asked that they pray for Morgan today. I especially want to thank my friend Cindy, who called at the right time, found out what was going on, and organized the troops to start praying for Morgan and standing in support of Jerry and myself. Once again, our prayers have been answered.
We have also been asking everyone to pray regarding Morgan’s test results. The results are in and once again the Lord has been faithful to us. Morgan had an EKG and an Echocardiogram earlier in the week to make sure that her heart had not suffered any damage during chemo. She had a dental exam yesterday. She had a bone scan yesterday and a very thorough CT scan today. The CT scan was more involved than we originally thought it would be because of the potential problems with her eye. We are thrilled to say that all of Morgan’s test came back NORMAL. We are one step closer to making it into transplant.
Our next step is a trip to clinic on Friday just to check counts. On Monday (1/27), we will meet with Dr. Letton, our wonderful surgeon, and the anesthesia team. Morgan will have surgery on Friday (1/31) to place her central line. This is an external line that will be used during transplant. We also have a tentative plan to go to Duke for some tests next week. We are supposed to travel to Durham on Monday after our visits with the doctors here. Morgan will undergo testing at Duke on Tuesday, Wednesday, and Thursday. We will come home Thursday night in order to have her line placed and then we will wait for the phone call saying that a bed is available on the transplant unit and we will be moving to Durham.
We know that prayer works so we are asking for continued prayers for our family. Please take the following items to the Lord:
1)Ask Him to make a place available for her as soon as possible. As I am sure you know, we are so ready to get this whole thing behind us.
2)Ask for His blessings on Morgan’s stem cells. Ask that He cleanse the cells that will be put back into her body and that each and every one of these cells be healthy and perfect.
3)Ask that He give her a transplant that is free from any complications.
4)Ask that the tests she has at Duke will give us the same wonderful results as the tests that she has already had.
5)Please continue praying for all of the other children with this horrible disease. Sarah, Henry, Jacob, Harrison, Trey, Rashawn, and Cam are still in need of prayer.
Thanks so much for checking in with us. Please help us in praising the Lord for all of the wonderful things He has done in our lives.
One other thing – a parent of a boy with leukemia has set up a way that websites of children with cancer and other life threatening diseases can be “adopted”. To adopt a website, you just have to agree to check on that child every so often and leave a message every now and then. If you are interested in offering words of encouragement to these children and their families go to www.chubbychica.com and click on the Caringbridge link. A very nice lady name Penni has adopted Morgan’s site and we are very appreciative.
Tuesday, January 21, 2003 at 06:36 PM (CST)
Hello friends. Just a quick update to let you all know what is going on.
Morgan is still in the hospital. Her counts have started coming up, which means she should be discharged tommorrow. She could probably could have been discharged today, but a battery of tests went on well into the evening which put discharge off until tommorrow.
Morgan had a preliminary dental exam, a bone scan (she had to be sedated for this one), and a preliminary eye exam. As is usually the case, we did not get the "every things ok" on these exams. There is always something hanging over your head when you are in a situation like ours. The optimologist said that Morgans right optical nerve looks abnormal. She could not rule out a tumor (this seems very similar to the black spot on the lung episode we had several months ago). She did say it could be a cogenital problem though (never thought I would pray that our daughter would only have a congenital eye problem). The optimologist plans to do a more thorough exam tommorrow when Morgan is sedated for a CT scan since she was not as cooperative as she could have been tonight.
So, I ask for a special prayer request tonight. I ask you to pray that there are no new tumors in Morgan's body and that the eye exam will reveal good news. Thank you all for your support and prayers. May God bless everyone of you.
Wednesday, January 15, 2003 at 04:59 PM (CST)
Hello Friends,
Our stay out of the hospital was short-lived. Last night, Morgan developed a fever of 100.8, so we had to return. We checked into our room about 9:00. Of course, after we arrived they took her temperature and it had fallen back within normal range. Morgan has enjoyed doing this to us since before she was born. In the last few weeks of my pregnancy with her, on two separate occasions the contractions started and as soon as we pulled up into the parking lot at the hospital, they stopped. I guess she has just always liked keeping everyone on their toes.
Her counts were way way down so they will be keeping us awhile. She had to have a blood transfusion last night because her hemoglobin had dropped to about 7. Her white count is now at 0.2. Platelets are 37, but they will be dropping even more since the white count is so low. I am expecting that she will need platelets tomorrow.
We are still waiting for Duke to give us a definite schedule. They do not seem to be in as big a rush to devise it as were are to get it. We have no idea what is going to be done when. But we will let everyone know as soon as we receive word.
No other news to report. Please keep Morgan and the rest of our family in your prayers. Our prayer needs for the moment are:
1) Pray for the Lord to bring Morgan's counts up quickly so she can be released from the hospital.
2) Pray for the Lord to put the people at Duke into action so we will have an idea of what is going to be going on in our lives over the next few weeks (months).
3) Pray for the Lord to protect Morgan from any further infections or illnesses so that things can proceed on schedule (if we ever get a schedule).
4) Pray for the Lord's blessings over Morgan's transplant. Ask Him to remove any unhealthy cells from the bunch and to grant her a transplant that is free from complications.
5) Please remember to pray daily for the other children with neuroblastoma and to ask the Lord for better ways of treating this monster. The names of some of the other children are Sarah (I heard today that her transplant is going really well -- Praise the Lord), Henry, Jacob, Harrison, Trey, and Rashawn.
I will do another update as soon as we receive a testing schedule or when we are discharged from the hospital (whichever comes first).
Thanks for checking in with us and for your continued prayers for Morgan's complete healing. God Bless You All!
Monday, January 13, 2003 at 09:08 PM (CST)
Hello Friends!
Our trip to clinic this morning was very uneventful. They took Morgan's blood, we waited for counts, and then we came home. She did not have to have any blood or platelets. Oh yes, I forgot to mention one thing about our visit -- when it was time to leave Morgan was working on an art project with Anna, a wonderful person from Child Life. Morgan was not as anxious to leave as I was so she screamed like I was beating her. Everyone was staring at me as I was dragging her to the elevator and I was so thankful when I climbed on board the elevator and found that there was no one else on it. Morgan was somewhat more composed by the time we reached the first floor, but we still had to pause for a moment so I could whisper some words of "encouragement" in her ear. Never ever did I think that Morgan would actually start enjoying her clinic visits.
We still do not know what the schedule will be for all of Morgan's tests. The only thing I know is that we go back to clinic on Thursday. Hopefully, by that time we will know more about her schedule.
Holden's cold/ear infection seems to be clearing up. Unfortunately, Morgan has developed a cough. Please pray that this will not turn into something that will cause us to be readmitted to the hospital.
I have another bit of sad information to report. Shawn Disney, a little boy with neuroblastoma from Nebraska, passed away on Saturday. His family needs prayer right now. Please ask for our Lord to grant them comfort during this difficult time. His website is www.caringbridge.com/ne/shawndisney if you would like to offer the family some words of encouragement.
Morgan's prayer needs have not really changed. This is what we need right now:
1) Please pray that the Lord will protect Morgan from infection now that her white count is starting to drop. We don't want to go back to the hospital but we also do not want to get things for Duke pushed back.
2) Pray that the Lord will reveal wonderful news to us when Morgan undergoes her tests. Ask Him to give us evidence that He has removed all of the the cancer from her body and that He has protected her from any side effects.
3) Pray for the Lord to be with Morgan during transplant. This is such a critical time and many kids do not make it out of transplant. Please ask Him to give her a transplant that is without complications. Also, ask Him to allow only perfect, healthy cells to be transplanted back into her.
4) Pray for the Lord to give Jerry and me wisdom in making decisions regarding Morgan's care. Also, ask Him to send her to Duke at the very moment she needs to go.
5) Remember the other children with neuroblastoma in prayer. Again, they are Sarah, Henry, Jacob, Harrison, Trey, and Rashawn (and countless others).
Thanks for your continued prayer and support. Look for another update on Thursday after our next visit to clinic and pray that one does not come earlier. If it does, then it means that we have had to go back to the hospital.
Friday, January 10, 2003 at 03:01 PM (CST)
Hello Everyone!
We are home. Morgan’s last round of chemo ended last night. She handled it like a little champion. She did experience some nausea and vomiting, but she did great. Everyone was very impressed by Morgan’s appetite during this stay. She had a huge craving for bacon. I think she had 15 pieces on Wednesday for lunch. When your child has cancer, if it has calories, then it is good for them so we were all thrilled by the bacon binges. We would like to personally thank the people at Oscar Meyer for inventing the pre-cooked bacon. It certainly made getting bacon for our little princess much easier.
It has been a very exhausting week. Holden has an ear infection. I took him to the doctor on Monday and they said that it was just a cold. Then, after he kept me up all night on Wednesday, Grandma Vicky took him back on Thursday. Sure enough, those little ears were red. He is now on an antibiotic and seems to be recovering slowly. He is cranky and so is Morgan (because of the chemo). This should be a really fun weekend at the Barnes house. We are all praying that Morgan does not get Holden’s cold and have to go back to the hospital.
I forgot to mention in my last update that the wonderful people from the Make-a-Wish foundation came to see us last Friday night. Morgan is going to go Disney World. . I was hoping her wish would be to have Mommy and Daddy’s mortgage paid off (HA HA), but when they asked her what she wanted she said she wanted to go see Mickey Mouse. Jerry and I have decided to make this trip after transplant. We just did not feel as if we could go and truly enjoy ourselves until this part of her treatment is behind us. Plus, I believe the coming weeks are going to be very busy for us and I am not sure how we would have been able to work a trip to Florida into the schedule.
We will return to clinic on Monday for counts. We will also get a preliminary schedule for all of the various tests that Morgan will have to go through. This schedule will be devised by the doctors at Duke. As I said in my last update, she will undergo lots and lots of testing and scans to make sure she is ready for transplant.
Thanks for all of the prayers – they have carried us through seven rounds of highly intensive chemotherapy. We believe that Morgan has done so well because so many people are lifting her up in prayer on a daily basis. Please continue to pray for her:
1)Pray that the upcoming tests will all have great results. Pray that her scans will show that she no longer has any cancer in her body. Also, pray that all of her systems will be functioning normally and have not been harmed by all of the chemo.
2)Pray for the Lord to protect Morgan as her blood counts start to drop. Ask Him to spare her from any infections that would cause us to be readmitted to the hospital. She will be spending enough time in the hospital when she goes to Duke. It would be nice to have a little break until that time.
3)Pray for the Lord’s wisdom in all aspects of Morgan’s treatment. Ask Him to send her to Duke at the best possible time. Also, ask Him to help Jerry and me make all the decisions regarding her care.
4)Pray for the Lord to bless Morgan’s stem cells. Ask that He not permit any cancerous cells to be placed back into her body. Also, ask that He grant her a transplant that is free from any complications.
5)Continue to pray for the other children with neuroblastoma. Please lift up Sarah, Henry (he is back in California after receiving the antibody treatments in NY), Jacob, Harrison, Shawn, Trey, and Rashawn (another little boy from Brenner who is currently at Duke in transplant). There are so many other children. Please ask the Lord to wipe this terrible disease off the face of the earth.
Our family thanks you once again for checking in with us. We appreciate all of you thinking of our family and praying for Morgan. Look for another update after our clinic visit on Monday.
Monday, January 06, 2003 at 07:56 PM (CST)
Hello!
I am pleased to report that the LAST round of chemo has officially started. We went to clinic this morning and waited and waited and waited for Morgan's counts to come back. The initial reports came back and did not look very good. The white count was 1.4 and normal is around 6.0. I was disappointed because I just knew that we would be sent back home to wait even longer for the next round of chemo to start. However, the Lord takes such good care of us. The white blood count consists of a variety of cell types. By closely examining the whites, they can tell what type of cells it mostly consists of. This is called ANC. When her ANC finally came back it was good enough. So round #7 of chemo was started this afternoon around 4:00. Praise the Lord. Please pray the this will be the last round of chemo that Morgan ever has to endure (with the exception of the nasty stuff they will do to her just prior to transplant).
We have had some really good days since my last update. On Friday, Grandma Penny and Aunt Debbie (Batten) came to Lewisville for a visit. This was great because Morgan has not seen her grandmother since Thanksgiving and it gave her to chance to show Grandma all of the toys she got for Christmas.
On Saturday, we traveled to Durham and looked at the house we will be moving into when Morgan goes into transplant. It is small, but perfect for our needs. It reminds me of the house in Ardmore I lived in when I was a very small child. The kids loved the house. Morgan parked herself in the living room and started looking at books and we had a hard time getting her to leave when we were ready to go. The master bedroom of the house has mirrors for closet doors and Holden entertained himself with those. He would run from the kitchen to the bedroom, look at himself, do a little dance, and the run back to the kitchen to start the process over again. This is the same house the Cain family lived in when Grace was in transplant and we are so thankful to them for the help they gave us in getting it.
So, what happens after this last round of chemo is complete? It seems that Morgan will spend the month of January recovering from chemo and undergoing a variety of tests. Basically, every one of her systems will be checked out before we can be given the go ahead to move to Durham. She will have more CT scans, bone scans, and another bone marrow test to make sure the chemo did it's job to remove all of the cancerous cells from her body. Her eyes will be checked, she will have a hearing test, her heart will be checked. She will even have a dental exam. We will be very busy during the month of January and I sure the time will fly by and before we know it Morgan will be undergoing transplant.
Please continue to pray for us. Jerry and I end each day in prayer. We always come before the Lord to thank Him for all of the blessings that He has given us. We always thank Him for everyone who is praying for Morgan and the rest of our family. We have had so many answered prayers and we just ask that you please keep praying. Please pray that:
1) This round of chemo will be easy on Morgan. These are the drugs that have made her extremely sick in the past. Please ask that He spare her from a lot of nausea and vomiting.
2) This round of chemo will completely remove any cancerous cells that are still in Morgan's body. Ask that He send the drugs directly to these bad cells and spare her healthy cells from any negative side effects.
3) Morgan will have great results from all of the tests that she will be having in the very near future. Specifically, ask that the Lord give us evidence that He has removed all of the cancer from her body and that her all of her systems are functioning normally.
4) The Lord will bless Morgan's transplant. Ask that He bless her stem cells that will be going back into her body and that there be no cancerous cells in the batch. Also ask that He grant her a transplant that is free from complications.
5) The Lord will grant complete healing to all of the children who have this disease. Unfortunately, the list I have seems to growing very quickly. Please pray for Sarah (she is in transplant now), Henry, Jacob, Harrison, Shawn (he is failing quickly and needs a miracle from our Lord), and Trey (his aunt signed Morgan's guestbook a few days ago). This is a terrible disease so all of the children needs lots of prayer. And remember Grace. Her family has been such a blessing to us during this time.
I will do another update when we are discharged from the hospital. Hopefully, we will be out by the weekend.
Thanks so much for checking in with us. We do not know where we would be without the care and support of each of you.
Thursday, January 02, 2003 at 01:03 PM (CST)
Hello Friends and Happy New Year to you all!
I just wanted to let everyone know that we were not able to start chemotherapy today. Morgan’s white count had dropped back to 1.1 (it was 8.8 on Monday). This is to be expected since she has not taken any neupogen since Sunday. The platelet count is actually coming up. The doctor seemed to think this was a good sign. The way he explained it to me is that in the “old days” (before neupogen) the platelet count was normally the first count to come up. When Morgan receives neupogen, it makes her white count come up using artificial methods. When the platelet count comes up, it is a sign that she is her bone marrow is naturally recovering without the use of drugs. He seemed really confident that we will not have to delay this last round of chemo much longer. I am supposed to take her back to the clinic on Monday. At this time she will have blood work done again. Even if the blood work is good (which is what we are praying for) we may have to wait because they have five other patients who are being admitted and there may not be a room for us.
I did get some good news today. I finally got the opportunity to speak with the doctor regarding Morgan’s pathology report from the lymph nodes that were removed on November 22. His exact words were “it looked good”. He went on to say that there were still neuroblastoma cells in the lymph nodes, but that most of them appeared to be dead or dying. Remember, there was one small spot of this that was left in her, so it is very encouraging to know that the chemotherapy has been doing its job.
We had the pleasure of running into Grace and her mother at clinic today. Grace was there to have some routine follow-up work done. It is such a blessing to see them because Grace is doing so well and it gives me great hope for what our life will be like in a year or so. Grace brought Morgan a little present to celebrate the end of her “yuck medicine” (chemotherapy). And while we could not start today, we are hopeful that the end of the yuck medicine is right around the corner. Morgan really likes Grace (as much as Jerry and I like her parents). Grace had to have some blood work done and was not very happy about it. Morgan walked up to her and gave her a hug, and for those of you who know Morgan personally you know that this is a big deal because Morgan is not a real touchy feely kind of kid (kind of like her mother). We are tentatively planning a play date when Morgan is up to it. Please keep praying for Grace and her family.
Speaking of prayers, these are our needs for the week:
1)Pray that the Lord will increase Morgan’s counts so that she can start her chemo on Monday or Tuesday. As you may have been able to gather, we are so ready to get this last round behind us and move on to the next step in the process.
2)Pray for the Lord to allow this last round of chemo to kill any remaining cancer cells that are still in her. Ask that He also protect her healthy cells from the negative side effects associated with the treatment.
3)Pray for the Lord’s blessing on Morgan’s stem cells. Ask Him to remove any cancerous cells that may still be in the bunch and to allow her to have a very easy transplant.
4)Pray for the Lord’s will to be done in all aspects of Morgan’s treatment. Ask that He time everything perfectly so that she does not have to wait for a room to come available at Duke. Also ask that He give Jerry and me the ability to make good decisions regarding her care.
5)Please remember to pray for complete healing for all of the other children who are suffering from neuroblastoma. I have learned of another little boy from Nebraska named Shawn. He is not doing very well at the moment. I think you can find a link to his website on our guest book. His mother left it. The names of the other children to pray for are Sarah, Henry, Jacob, and Harrison.
Also remember to praise the Lord for good news we received regarding Morgan’s pathology reports. He has been taking such good care of us throughout this whole ordeal and we have been blessed in so many ways.
I hope everyone has a great weekend. I hope that I will not have to do another update until Monday with our next visit to clinic. Thanks again for your continuing care and support of our family.
Monday, December 30, 2002 at 07:08 PM (CST)
Hello Everyone!
I just wanted to let everyone know that Morgan went back to the clinic today. Her white counts are now within normal range. It was 8.8 and normal is 6.0. All of her other counts were low and since her neupogen shots have been stopped, the white count may drop some also. If all of her counts are not normal on Thursday, chemo will again be pushed back until January 6. Please pray that this does not happen, this is her last round of chemo before we go to Duke and we are really anxious to get it out of the way. Not to mention the fact that we really need to stay on schedule so we don’t have to delay transplant.
I have some very sad news to report. Jerry’s beloved grandmother, Delia Batten, passed away this morning around 4:30. The family is deeply saddened, but her health had deteriorated to the point that it was best for her to go. Jerry has a special place in his heart for his grandmother. She was like a second mother to him and he will miss her greatly. Delia was a very special lady and truly devoted to her family.
Visitation for Delia will be Tuesday night from 7:00-9:00 at JC Green Funeral Home in Thomasville. There will be a graveside service at Unity Methodist Church. The funeral procession will depart JC Green at 11:00.
Please pray for the Lord to comfort the family during this time of loss. We are still in need of much prayer for Morgan. These are our current prayer needs:
1) Please pray that the Lord will increase all of Morgan’s counts so that chemo can start on Thursday.
2) Pray for the Lord to prepare Morgan’s body for the next round of chemo. These particular drugs have a history of being rough on her, causing a lot of nausea. Pray that the Lord will use these drugs to totally remove every cancerous cell from her body and that He will never permit any new cancerous cells to grow. Also ask for Him to protect her healthy cells so that she will suffer no negative side effects of the treatment.
3) Pray for the Lord to bless Morgan’s stem cells. Ask that He make them all healthy and to remove cancerous cells from the bunch that may be there. Ask Him to give Morgan a transplant that is free from complications.
4) Pray for the Lord to take total control of Morgan’s treatment plan. Ask for Him to send us to Duke at the very moment we need to go and to grant Jerry and me the wisdom necessary for making good decisions regarding Morgan’s treatment.
5) Pray for the Lord to bless all of the children who are currently battling neuroblastoma. Ask that He heal Sarah, Henry, Jacob, and Harrison. And ask for His continued blessings on Grace.
As you can see, I have attempted to spruce up Morgan’s site. The picture we added at the top was taken on July 26 and she was diagnosed with cancer on July 31. It is about time that we tried to do something more exciting with the page since Jerry is a computer programmer and does this kind of thing as a career. I have also added a new Christmas picture of Morgan in the photo album.
Thank you for continuing to check on us and especially thank you for all of the prayers that are being lifted up on Morgan’s behalf. I will do another update on Thursday after we know for certain what is going on with that next round of chemo.
Friday, December 27, 2002 at 06:18 PM (CST)
Hello!
I just wanted to let everyone know that the Barnes Family is now accepting donations in order to build a new wing onto our house to hold all of the new toys our children recieved for Christmas! HA HA HA! Seriously, our children had a wonderful Christmas and now our house looks like Toys R Us. But, that is okay -- if it brings them pleasure, then it is all right by us.
Our Christmas truly was wonderful. It was the first day since July 31 that I have been able to put cancer in the back of my mind. The kids were so happy and had so much fun. It was great not being in the hospital and just being together as a family. The Lord continues to bless our family each and every day!
Our visit to clinic was very short today. All they had to do was take a blood sample, and then we waited around for the results. The good news is that the white count is on its way up. It is now 1.8 and it was 0.2 when we were discharged from the hospital on Tuesday. The bad news is that it still is not high enough. This means that we will continue with neupogen shots. Neupogen is a drug that is like a steroid for white blood cells. Once they start growing, the neupogen helps them to grow very very quickly. I am rather proud of myself because I have started giving Morgan her shots. I guess I have been a wimp up until this time. Two friends from church who are nurses (Karen and Pam) have been doing it. I figured that since it was Christmas I would not disturb their families and have them come over. I have been giving them for about a week now and it is going okay. I knew I was going to have to start doing it on my own because when we go to Durham, Jerry and I will be fending for ourselves. I would like to take this opportunity to thank Karen, Pam, and their families for taking time out of their schedules to come over and help us out.
Since Morgan's white counts still are not great, her chemo will not start on Monday. We will go back to clinic on Monday for blood counts. If things look okay, then we will check in for chemo on Thursday. We really need everyone to pray that Morgan's white cells will grow grow grow over the weekend so that chemo will not be delayed any longer than necessary. We certainly do not want to get into an ordeal where our schedule for going to Duke gets messed up due to delays in Morgan's chemo.
Please remember us in prayer in the following ways:
1) Pray that Morgan will show a dramatic increase in her white blood count on Monday so that she can start her last round of chemo on Thursday.
2) Pray for the Lord to prepare Morgan's body for the next round of chemo. Ask Him to allow the cancerous cells to respond to the drug and be removed from her body forever. We also need for Him to protect all of her healthy cells so that she will not suffer from any negative side effects from the chemo drugs.
3) Pray for the Lord's blessings on Morgan's stem cells. Ask that He make each and every one of them healthy and perfect for transplant. Please ask that He allow healing to begin as soon as they are transplanted into her body and grant her a transplant with no complications.
4) Ask for the Lord's will to be done in every aspect of Morgan's treatment. Jerry and I need guidance from Him on whether or not to take Morgan to New York after transplant for the antibody treatment. Also, we would like for the Lord to allow us to get down to Duke quickly without having to wait for a room on the unit to open up for us.
5) Please remember the other children with neuroblastoma in your prayers (Sarah, Henry, Jacob, and Harrison). Also remember to pray for Grace's continued good health.
I have posted a new picture of Morgan so you may want to check it out. I will do another update after our clinic visit on Monday.
Thanks for checking in with us and may the Lord bless you all!
Friday, December 27, 2002 at 06:18 PM (CST)
Hello!
I just wanted to let everyone know that the Barnes Family is now accepting donations in order to build a new wing onto our house to hold all of the new toys our children recieved for Christmas! HA HA HA! Seriously, our children had a wonderful Christmas and now our house looks like Toys R Us. But, that is okay -- if it brings them pleasure, then it is all right by us.
Our Christmas truly was wonderful. It was the first day since July 31 that I have been able to put cancer in the back of my mind. The kids were so happy and had so much fun. It was great not being in the hospital and just being together as a family. The Lord continues to bless our family each and every day!
Our visit to clinic was very short today. All they had to do was take a blood sample, and then we waited around for the results. The good news is that the white count is on its way up. It is now 1.8 and it was 0.2 when we were discharged from the hospital on Tuesday. The bad news is that it still is not high enough. This means that we will continue with neupogen shots. Neupogen is a drug that is like a steroid for white blood cells. Once they start growing, the neupogen helps them to grow very very quickly. I am rather proud of myself because I have started giving Morgan her shots. I guess I have been a wimp up until this time. Two friends from church who are nurses (Karen and Pam) have been doing it. I figured that since it was Christmas I would not disturb their families and have them come over. I have been giving them for about a week now and it is going okay. I knew I was going to have to start doing it on my own because when we go to Durham, Jerry and I will be fending for ourselves. I would like to take this opportunity to thank Karen, Pam, and their families for taking time out of their schedules to come over and help us out.
Since Morgan's white counts still are not great, her chemo will not start on Monday. We will go back to clinic on Monday for blood counts. If things look okay, then we will check in for chemo on Thursday. We really need everyone to pray that Morgan's white cells will grow grow grow over the weekend so that chemo will not be delayed any longer than necessary. We certainly do not want to get into an ordeal where our schedule for going to Duke gets messed up due to delays in Morgan's chemo.
Please remember us in prayer in the following ways:
1) Pray that Morgan will show a dramatic increase in her white blood count on Monday so that she can start her last round of chemo on Thursday.
2) Pray for the Lord to prepare Morgan's body for the next round of chemo. Ask Him to allow the cancerous cells to respond to the drug and be removed from her body forever. We also need for Him to protect all of her healthy cells so that she will not suffer from any negative side effects from the chemo drugs.
3) Pray for the Lord's blessings on Morgan's stem cells. Ask that He make each and every one of them healthy and perfect for transplant. Please ask that He allow healing to begin as soon as they are transplanted into her body and grant her a transplant with no complications.
4) Ask for the Lord's will to be done in every aspect of Morgan's treatment. Jerry and I need guidance from Him on whether or not to take Morgan to New York after transplant for the antibody treatment. Also, we would like for the Lord to allow us to get down to Duke quickly without having to wait for a room on the unit to open up for us.
5) Please remember the other children with neuroblastoma in your prayers (Sarah, Henry, Jacob, and Harrison). Also remember to pray for Grace's continued good health.
I have posted a new picture of Morgan so you may want to check it out. I will do another update after our clinic visit on Monday.
Thanks for checking in with us and may the Lord bless you all!
Tuesday, December 24, 2002 at 12:58 PM (CST)
Hello Friends!
I just wanted to do a quick update and let everyone know that we were able to break out of the hospital today. This was kind of like our Christmas gift from the doctors. I do not think they would have discharged us if it had not been Christmas Eve. Morgan's white counts are still way way down. I think the more chemo she has, the longer it takes for them to come up.
Anyway, I will keep this update short. I just wanted to let everyone know that we are home and to keep praying for us.
Please ask our Heavenly Father to:
1) Make white blood cells grow in Morgan's body. This will allow Morgan to have an immune system. And it means chemo will stay on schedule as long as her counts recover by 12/30.
2) Take total control of Morgan's treatment. Ask Him to send Morgan to Duke at the very moment she needs to go and to help Jerry and me make decisions regarding her care. Specifically, we need insight on whether or not to pursue the antibody treatment at Sloan-Kettering.
3) Bless Morgan's stem cells. Ask Him to make each and every one of these cells healthy and perfect for transplant so that complete healing can begin as soon as they are transplanted back into her body. We would like for the Lord to give Morgan a transplant that is totally free from any complications.
4) Prepare Morgan's body for the next round of chemo. Please ask Him to allow this final round of chemo to remove every cancerous cell from her body and never permit new ones to grow again. Also, please ask the He spare her healthy cells so that she will not suffer from any negative side effects as a result of her treatments.
5) Grant complete healing to the other children who are fighting neuroblastoma. Their names are Sarah, Henry, Jacob, and Harrison. Also ask Him to continue to bless Grace with good health.
Morgan goes back to clinic on Friday and I will do another update then. Merry Christmas to all of you and thank you so much for your continued prayers and support.
Sunday, December 22, 2002 at 07:49 PM (CST)
Hello Friends!
Unfortunately, I have a early update to post. Morgan had to go back to the hospital last night. Around 7:15 last night, I took her temperature and found that it was 100.5. I immediately called the doctor and they said bring her in to the emergency room. She was readmitted and we checked into our room around 11:00. We spoke with one of her doctors today and he said that three things must happen before she is allowed to come home. First, her fever must be gone. Second, the cultures they are running on her blood must show no signs of bacteria. Third, her white blood count must rise. We have already accomplished the first two. She has not had a fever since last night. Her cultures show no signs of infection. This includes the cultures they started on her when we checked in on Thursday and the ones they did on her last night. However, the third item on the list is what we are waiting on. They did a complete blood count on Morgan when we got to the emergency room and her white count was 0.3. They did another one this morning and it was 0.1. The good news is that it has hit rock bottom and there is no where else to go but up. The bad news is that we have no idea when this will happen.
Yesterday was not a totally bad day. Our family went on a Fantasy Flight to the North Pole. This event was sponsored by United Airlines and was for children with life threatening illnesses. We had to be at the airport at 5:45 am for our "flight". We met Santa Claus and he had huge presents for both Morgan and Holden. We also met Kyle Petty. I must say I was very impressed by him. He seems like a very kind and sincere man who truly loves children. There was an article about this on the front page of the metro section of the Winston-Salem Journal. One of the local channels also reported it on the news. You may have seen our family getting on and off the plane. This was a super event.
We are still hoping to be home for Christmas. I am sure the doctors will try their best of get us out of there. But we will just have to wait and see what happens.
Please pray for us in the coming week. Please ask our Heavenly Father to:
1) Make white blood cells grow in Morgan's body so that she can be discharged from the hospital in time for Christmas.
2) Take total control of Morgan's treatment. Ask Him to send Morgan to Duke at the very moment she needs to go and to help Jerry and me make decisions regarding her care. Specifically, we need insight on whether or not to pursue to antibody treatment at Sloan-Kettering.
3) Bless Morgan's stem cells. Ask Him to make each and every one of these cells healthy and perfect for transplant so that complete healing can begin as soon as they are transplanted back into her body. We would like for the Lord to give Morgan a transplant that is totally free from any complications.
4) Protect Holden. Since we are in the hospital again our family is seperated.
5) Grant complete healing to the other children who are fighting neuroblastoma. Their names are Sarah, Henry, Jacob, and Harrison. (By the way, Harrison's line infection is healing.). Also ask Him to continue to bless Grace with good health.
I will do another update when Morgan is discharged from the hospital. If you do not hear from me before Christmas then I wish you all a wonderful holiday. This is a wonderful time of year to thank the Lord for all of the wonderful things that He has done. Jesus was His most precious gift to us all!
Friday, December 20, 2002 at 06:50 PM (CST)
Hello Friends!
Our visit to clinic yesterday did not go quite as well as we were hoping. Morgan had to have platelets and whole blood. To start things off, her porta-cath was clogged. They injected some medicine into it, and 45 minutes later they were ready to start giving her platelets. They decided to give her platelets in the clinic and then move her down to the day hospital for the whole blood. As she was getting her platelets, someone decided to take her temperature. Unfortunately, it was 100.6. This means that they scrapped the idea of going to the day hospital and she was admitted into a regular room on the ninth floor. We had to spend last night in the hospital. Fortunately, the Lord was looking out for us. Morgan's temperature never got high again, so they did not have to start antibiotics and we were able to be discharged today. So it just turned out to be a really really long clinic visit. We were kind of nervous there for a little while because we thought that this thing could mean being in the hospital over Christmas. Hopefully, that will not be the case.
Morgan's white blood count is still very low. She will continue her neupogen shots at least through Monday. The home health agency delivered five more shots to our door this evening, but we are hoping that we do not have to use that many.
The next step is to return to the clinic on Monday. I will do another update at that time, or before if something unusual happens. But, we would appreciate everyone praying that nothing unusual happens. Speaking of prayers, we are still in need of them. When you pray, please remember us in the following ways:
1) Pray for Morgan's white blood count to come up. This will mean that she is able to fight off infections like a normal person and will make the holidays a little less stressful for us.
2) Pray that the Lord will bless Morgan's stem cells that are awaiting transplant. The transplant date is around the first of February. It will be here before we know it. Pray that the Lord will make each one of those cells perfect so that healing can begin at the moment they are placed back into her body.
3) Pray for the Lord to be in total control of Morgan's treatment. Ask that He send us to Durham at the right time and that He makes a spot available for Morgan. Also, ask Him to guide Jerry and I in all of the decisions we make regarding Morgan's care.
4) Pray for total and complete healing. Ask Him to remove every cancerous cell from her body and never permit the growth of any new ones.
5) Please remember the other children with neuroblastoma. Say a special prayer for Harrison. He has a very serious line infection and is being treated very aggressively for it. Also, ask for healing for Sarah, Henry, and Jacob. And don't forget to ask Him for Grace's continued good health.
Monday, December 16, 2002 at 07:10 PM (CST)
Hello Friends!
I just wanted everyone to know that our clinic visit was nothing exciting today. This is a great thing! Morgan's counts are on the way down, but this is to be expected. Her immune system should be temporarily shutting down sometime in the next few days. Therefore, she will continue taking those neupogen shots until it snaps back into action. The good news is that we did not need platelets or blood today. As her counts continue to drop, the chances of fever increase, so please keep Morgan in your prayers so that we will not have to go back to the hospital before December 30 for the next scheduled round of chemo.
We took Morgan and Holden to the Festival of Lights tonight. This was a big hit. I am sure we will be making a few more trips there before the end of the holiday season. This is a great activity for Morgan since she is not supposed to be in big crowds because of the problems with her immune system.
Our prayer needs are the same as they were in the last update. They are:
1) Pray that the Lord will protect Morgan from any fevers or infections. Please ask Him to allow us to stay out of the hospital until the next round of chemo on Dec. 30.
2) Pray that the Lord will totally remove all of the cancerous cells from Morgan's body and never allow them to return again.
3) Pray for the Lord to bless Morgan's stem cells that are awaiting transplant. Ask Him to make these cells strong and healthy so that they can bring about healing at very moment they are transplanted back into Morgan's body.
4) Pray for the Lord's wisdom in the timing of all of Morgan's treatments. Specifically, ask that He provide a spot for her on the transplant unit at the very moment she needs to go.
5) And remember to pray for the other children with neuroblastoma. Sarah reported to Duke today and will probably have her transplant sometime in the next week or so. Henry is still in NY continuing with the antibody treatment. Harrison is still dealing with the central line infection and still needs our prayer. Jake is continuing with his treatments in Charlotte and NY.
Please remember Grace too!
I will do another update on Thursday when we make our next trip to clinic.
Wednesday, December 11, 2002 at 08:37 PM (CST)
We are now at home. Round #6 of chemo is officially over. The whole process was fairly uneventful. Morgan had a few episodes of nausea and vomiting, but nothing very serious. Morgan was extremely tired when we came home this afternoon. She was agitated and nothing would console her. She cried and screamed a lot. There were times that I even had to physically restrain her because I thought she was going to hurt herself. This was no fun at all, but I think part of it was due to some of the nausea medicine she was given right before we left the hospital. I must admit, this hit me kind of hard. I cried along with her because it was obvious she was miserable. I am now dealing with so many things that I never imagined could be part of motherhood.
I want everyone to know that I have officially been demoted. I spent Monday night at home with Holden. When I got to the hospital on Tuesday, Morgan told me that she wanted to see her mother. I said "Morgan, I am right here." Her reply to me was, "No, my other mother. The one who lives in the blue house." For those of you who don't know my parents live in a blue house. Morgan has decided that my mother is her mom/mother. Don't worry though -- she does not think of me as her sister. I am still mommy. But Grandma is mom. I think (or hope) that this comes from the fact that Morgan hears me call my mother mom.
In fact, one of the reasons Morgan was so angry this afternoon was because she wanted to see her grandma. Well, she finally got her wish because Grandma and Paw-Paw came to pick her up and took her home to bake cookies. I am sure my parents could use a break. They had Smith and Morgan Friday night, Morgan again on Sunday, and Holden on Monday. WOW!
Hopefully, we will be able to stay at home for a while. The next thing on our agenda is to go to clinic on Monday for counts. Round #7 of chemo is scheduled to start on December 30. Our target date to go to Duke for the bone marrow transplant is February 1. This actually works out quite nicely because hopefully we will not be in the hospial on Christmas.
On a sad note, Jerry's grandmother is not doing well at all. For those of you who know Jerry, you know that his grandmother is a very special person to him and he lived with her for most of his childhood. Our understanding from the hospice nurses is that she will be meeting Jesus sometime in the next few weeks. Please pray for Delia and the rest of the family.
Speaking of prayer needs, we still have a great many.
1) Pray that the Lord will protect Morgan from any fevers or infections. Please ask Him to allow us to stay out of the hospital until the next round of chemo on Dec. 30.
2) Pray that the Lord will totally remove all of the cancerous cells from Morgan's body and never allow them to return again. We received the pathology reports from the lymph nodes that were removed back in November. We know that neuroblastoma cells were still present in the masses they removed. We were hoping to find that all of those nasty little cells were dead or dying. We are not sure what this means because we have not really had a chance to discuss this with the oncologists. We feel though that if we turn it over to God, then the problem will be solved.
3) Pray for the Lord to bless Morgan's stem cells that are awaiting transplant. Ask Him to make these cells strong and healthy so that they can bring about healing at very moment they are transplanted back into Morgan's body.
4) Pray for the Lord's wisdom in the timing of all of Morgan's treatments. Specifically, ask that He provide a spot for her on the transplant unit at the very moment she needs to go.
5) And remember to pray for the other children with neuroblastoma. Sarah is reporting to Duke on Monday to begin the transplant process. Henry is now in NY and has started the antibody treatment. Harrison has an infection in his central line and needs prayer so that it will go away. Jake is continuing with his treatments in Charlotte and NY.
Please remember Grace too!
I will try to do another update after we go to clinic on Monday.
Sunday, December 08, 2002 at 07:58 PM (CST)
Hello Everyone!
I just wanted to let everyone know that our plans have changed slightly. The doctor called on Friday and said that we could start Morgan's chemo on Monday. So, our plan for tomorrow is to go to clinic around 12:00 and get blood counts and do all of that other preliminary stuff. Then, we will see Dr. Letton at 1:30. After our visit with him, we will check into the hospital for round #6. Please say a few prayers for Morgan on Monday, Tuesday, and Wednesday. This is a short treatment so we should be checking out of the hospital on Wednesday. It is going to be kind of hard getting back into the swing of things since we have had such a nice, long break.
We have had a wonderful weekend. On Saturday, we went to a Christmas party sponsored by the oncology support group at Brenner. Both of the kids especially likes the African drummers. Morgan wanted to dance and Holden kept trying to sneak off and help the drummers to their thing. Santa Claus also made an appearance at the party with presents in his bag. Most of the kids sat on Santa's lap and had their pictures taken. However, the Barnes children would have none of that. They stood beside of Santa and had their picture taken (and their Daddy had to be in the picture too). Morgan has an understanding with Santa -- he can bring her all of the presents he wants, but she does not want to be in close contact with him. I guess she shared her thoughts with her brother because he seems to feel the same way.
I guess the highlight of the party was that Morgan got to meet Grace Cain in person. Grace had neuroblastoma and is 18 months out of transplant. I think I see the beginning of a nice friendship. It was so nice to introduce Morgan to another child who did not look at her strange because she has no hair. The Cain family is certainly helping us out so much with all of the advice and support they are giving us.
On Sunday, the Byrd family had a gathering at Grandma and Paw-Paw Morgan's house. Morgan got off to a rough start and was in a very bad mood. However, things seemed to get better as the evening progressed. Most of her cousins were there and she was able to play and play and play. When it was time to come home, Morgan refused to leave. Therefore, Morgan is spending the night with Grandma and Paw-Paw tonight.
As always, the Barnes family needs lots of prayer. We know that so many people are praying for us because we can honestly see the results in our lives everyday. Please pray that:
1) Morgan will do really well this round of chemo. Please ask our Lord to target any cancerous cells that are remaining in her body. We need for Him to kill each one of them and never permit them to return again. Also, please ask that He protect her healthy cells from any negative side effects.
2) Please ask our Heavenly Father to bless Morgan's stem cells that are waiting for her in Durham. Please ask him to make them strong and perfect for transplant so that as soon as they are placed back into her body, healing will begin.
3) Pray that the Lord will see to it that Morgan will not have to wait for a bed on the transplant unit at Duke.
4) Please remember to pray for Holden. He, like the rest of us, has grown very accustomed to Morgan not being in the hospital. We will be separated from him for the next few days, which will not be easy for him.
5) Please continue to pray for the other children with neuroblastoma. Please ask for complete healing for Morgan, Sarah, Henry, Jacob, and Harrison. And don't forget to pray for Grace.
Thanks for checking in and for all the support you are giving us. I will do another update after Morgan is discharged from the hosptial. God Bless You All!
Wednesday, December 04, 2002 at 04:31 PM (CST)
Hello Everyone!
I just wanted to check in with everyone since it has been a week since our last entry. I am happy to report that I have nothing to report. Morgan has had a great week and we have been a normal family. She recovered quickly from her surgery and is full of energy.
We spent Thanksgiving at Uncle Mike and Aunt Ruffin's house. It was a wonderful meal and Morgan and Holden had lots of time to play with Cousin Smith. On Friday, we went to Thomasville and visited with Grandma Penny. We did not think Morgan could handle going to visit everybody all in one day. This actually worked out wonderfully because we were not rushed through our visits.
The rest of the holiday weekend passed by very quickly. We did some shopping and since Morgan's counts are good, she was able to go too. We even went out to eat Sunday night. This was the first time we have been to a restaurant as a family since Morgan was diagnosed. It was a wonderful glimpse at what our life will be like once we are able to put neuroblastoma behind us.
Today Morgan and Holden went out to play in the snow. Morgan loved the snow. Holden liked it a lot too except he kept falling down. I think by the end, he was much colder and wetter than Morgan. We took some pictures of them and will post them as soon as we get them developed. For some reason, we did not even think about taking some shots with the digital camera until we had already come back into the house. When we came in from the snow, Morgan wanted a popsicle. Most kids want something warm after playing in the snow, but not Morgan.
We still have a nice little break from the hospital. On Monday, we will go see Dr. Letton. He will determine if Morgan is ready for her next round of chemo. I can't imagine why she wouldn't be. This means we will probably start round 6 of chemo on Tuesday.
Of course we are still in need of prayer. Please remember us in the following ways:
1) Pray that the Lord will prepare Morgan's body for her next round of chemo. Ask Him to make the cancerous cells receptive to the medicine and for Him to protect her healthy cells so that she will suffer no negative side effects of treatment.
2) Pray that the Lord will bless Morgan's stem cells that are in Durham awaiting transplant. We would like for Him to make them super strong so that healing can begin as soon as they are transplanted back into her body.
3) Pray that the Lord will time everything perfectly. We should ask Him to open up a spot on the transplant unit on the exact day that Morgan needs to go. A target date has been set for us around the first of February.
4) Pray the Morgan will be released by her surgeon, Dr. Letton, so that she can start chemo on Tuesday. This will keep us on our schedule.
5) Remember all of the other children who have neuroblastoma. Sarah is scheduled to report to Duke for her BMT within the next few weeks. Henry went to Sloan-Kettering yesterday to begin his antibody treatment. Harrison's bone marrow just came back clean. He was diagnosed in May and this is the first time that this has happened (Praise the Lord). Jacob is continuing with his treatments in NY.
Also pray for Reese. Reese's grandmother lives here in Lewisville. He has a genetic condition and he will undergo his BMT beginning tomorrow.
And remember Grace, who is doing well and seems to be winning the battle against neuroblastoma and providing so much hope for the rest of us.
Thanks again for your continued prayers and support. I will try to do another update after we meet with Dr. Letton on Monday.
Also, we have posted a new picture. It is Morgan on Halloween trick-or-treating at the hospital.
Wednesday, November 27, 2002 at 05:04 PM (CST)
Hello Everyone! We finally have an update. Since tomorrow is Thanksgiving, we just wanted to let everyone know all of the things that we are thankful for. We have so many reasons to praise the Lord.
First, Morgan recovered very quickly from the surgery. She was moved out of the PACU on Saturday afternoon. And we were released from the hospital on Tuesday. The only bit of trouble that she had was that she got some chest congestion due to lying so still for such a long period of time. I think we have discovered the one thing that Morgan dislikes more than anything else in the hospital -- respiratory therapy. Everytime someone would walk into the room, Morgan would say "please don't pat me on the back".
Second, the surgery was successful. Dr. Letton removed 99% of the material that he wanted to get. There is one small spot left in her. The only way he could have gotten it was to have taken her kidney, and he did not feel this was necessary at this time. We are still waiting for the pathology reports. Hopefully, they will show that there are no more active cancerous cells.
Third, we are going to have a nice long break from the hospital. We don't have to go back (not even to clinic) until December 9. We meet with Dr. Letton on that day. If he feels that Morgan is ready to be released from his care, then she will probably check in for chemo the next day. This is wonderful because Morgan seems to be feeling really good and this gives her a chance to enjoy herself before the next round of chemo.
Fourth, we received the news regarding Morgan's bone marrow and no tumors were found. Praise the Lord! He is so faithful to us in answering our prayers. Waiting for this news was very difficult. We were told on Friday we would know on Monday. Monday they said it would be Tuesday. Tuesday they said it would be Wednesday. I think I finally pestered them enough today that they made sure the results came in. I received the phone call around 5:30. I am so thankful that they thought to call me rather than making us wait through the holiday weekend.
We found out that a target date has been set for us to report to Duke. If things go according to plans, we will be moving to Durham around the first of February.
As you can see, we have so many praise reports. Let's remember to thank God for all of the blessings He has provided for us. Also please continue to pray that:
1) The pathology reports for Morgan's lymph nodes will show that the Lord has killed every cancerous cell within her body.
2) The Lord will bless Morgan's stem cells. We would like you to ask that He make them strong and perfect to be put back into her body and that healing will begin as soon as they are transplanted.
3) The Lord will provided a bed at Duke on the very day that Morgan needs to go.
4) The Lord will cure her of this horrible disease and never allow it to return to her.
5) Please continue to pray for the other children with neuroblastoma. Sarah has finished her chemo and will be going to Duke around the middle of December. Henry seems to be doing well after his transplant. The family is planning on going to Sloan-Kettering very soon to receive the antibody treatment. Jacob and Harrison are continuing with their treatments at Sloan. And please remember Grace. She is still doing well and giving hope to the rest of us who are trying to defeat this disease.
Also, please pray for Reese. His grandmother lives here in Lewisville. He has a genetic disorder and he went to Duke Monday and has began his bone marrow transplant.
Thanks for all of your prayers. Once again, we know that they Lord is listening to us. Please continue to keep our family in your thoughts and prayers. Happy Thanksgiving!!!
Also, check on the new pictures of Pilot Morgan and part of her flight crew. Thanks again to Uncle Wallace for taking us up, up, and away!
Friday, November 22, 2002 at 09:06 PM (CST)
Hello friends. I am writing a quick note to everyone to inform you about today's surgery and to praise God for it being a success.
Morgan went into surgery today about 11:00 AM. She was in surgery for approximately 3.5 hours. Dr. Letton was able to extract 99% of the material that had been affected by the cancer. There was one spot that he could not get because it had fused together with some blood vessels. Dr. Letton said that this spot may be scar tissue (wouldn't that be great). If it is not scar tissue, it is still very small. Since the cancer seems to be responding well to the chemo, this spot should also.
Morgan did well during the surgery and is resting in the intermediate care unit of Brenner's. Hopefully she will be moved to a private room tommorrow.
I thank you all for your prayers and support. Without God and you, Allison & I would be lost. We thank God everynight for the kindness that you have shown us.
Allison will write a more detailed update soon. Until then, please pray the bone marrow test performed today will bring good news (we didn't get the results today unfortunately), that Morgan will recover quickly, and that God will bless all of the children and parents who are fighting neuroblastoma. God bless you all.
Thursday, November 21, 2002 at 04:20 PM (CST)
What a wonderful week we have had. There are so many reasons to praise the Lord! The best news we have to share is that we have been out of the hospital now for 17 days. This is a new record for us.
On Wednesday, Morgan had a wonderful experience. She went for a plane ride. Her great-uncle Wallace has a plane and he took us for a flight. We flew over our house and even saw Grandma and Paw-Paw Morgan standing in their driveway waving at us.
Today Morgan had another exciting day. We went to Lowgap to play with her cousins, Rebecca and Kate. Since today is Jerry's birthday, we are going to have a small party complete with cake and Barbie party hats (complements of Rebecca and Kate).
We check into the hospital tomorrow morning at 8:30. Morgan's surgery is scheduled to begin at 11:00. Please say a prayer for her and the rest of our family tomorrow. It will be a long day, and I am sure we will all be glad when it is over.
As always, we have prayer requests.
1) Please pray that Morgan recovers quickly from her surgery. Please ask our Lord to guide the surgeon's hands so that everything that needs to be removed from Morgan's body can be successfully extracted.
2) Please pray for good results from Morgan's bone marrow test tomorrow. As I have said before, the doctors here in NC will not do much for her if her bone marrow is still seriously diseased. We really need the Lord's help on this one.
3) Please pray for the Lord's blessing over Morgan's stem cells that are awaiting transplant in Durham. Please pray the He will make these cells perfect for transplant because the time is quickly drawing near for us to be going to Duke.
4) Please pray for Holden. Going back into the hospital means that he will be separated from us again. Pray for the Lord to protect him and give him contentment.
5) Finally, please remember to pray for the others who are battling this disease -- Sarah, Henry, Jacob, Harrison, and so many others. Also, please keep Grace in your prayers.
Thursday, November 14, 2002 at 06:49 PM (CST)
Hello Everyone!
I know I said that I would send an update as soon as I knew when they were going to do schedule. I am sorry that it is now Thursday and I am just getting around to doing this.
I took Morgan to clinic on Monday. She needed platelets so we spent quite a while there. I found out that her surgery is scheduled for Friday, November 22. Please keep Morgan in your prayers on this day. We will be meeting with the surgeons on Monday and should get more information about the surgery.
They also told me on Monday that I needed to bring Morgan in for her follow-up CT scan on Tuesday. So, they finally got around to re-checking that spot on her lung. This is the reason why I waited to do an update, I wanted to have the results of the scan.
GOD IS SO WONDERFUL! He has answered our prayer again. The spot on Morgan's lung has vanished. Thanks to everyone who said a prayer that this would happen. We have found that the Lord continues to answer our prayers and in the midst of our dispair He is the only comfort we have. It gives us such reassurance to know that we can turn to Him and He will hear us. I can not imagine going through this without knowing the love of Jesus.
Jerry and I have contacted Sloan-Kettering Hospital in New York. This is a cancer research facility. They have an antibody treatment which seems to be doing very well in keeping kids with neuroblastoma from relapsing. This may be an option for us after Morgan's bone marrow transplant is complete. Right now we are praying for direction from the Lord regarding Morgan's treatment and we feel confident that He will lead us in the right direction.
We praise God for the progress that is being made in curing Stage IV Neuroblastoma. In our research, we found that in the 1980's the survival rate for this disease was less than 10% and in the 1990's it was 20%. Today it is about 50%. The work that is being done by places like Sloan-Kettering is increasing these numbers. We pray that the Lord will allow continuing progress so that soon no more children will have to suffer from this wretched disease.
Of course we are still in need of prayer. We are so thankful that the Lord answered our prayers regarding Morgan's lung. We know He is hearing us, so let's keep praying.
1) Pray that God will grant Morgan's surgeons the skills and wisdom to make her surgery 100% successful. It is our prayer that every cancerous lymph node will be removed and Morgan will recover quickly.
2) Please pray that Morgan's bone marrow will show no evidence of disease. This is very important. We are not sure what would happen in terms of Morgan's treatment if the chemotherapy proves to be ineffective in her bone marrow. We must all stand in agreement that the Lord has already healed Morgan's bone marrow.
3) Please pray that the Lord will continue to protect Morgan from fever or infection. We are really enjoying taking a break from the hospital for a while and we would really like for Him to allow us to stay at home until Morgan's surgery.
4) Please pray that the chemo drugs will not harm Morgan in any way. There are some pretty severe side effects from these drugs and we would like for the Lord to protect her from these.
5) Finally, please remember to pray daily for the other children with neuroblastoma. We know that only God can completely heal these children. Their names are Sarah, Henry, Jacob, and Harrison. Also, please keep Grace in your prayers. Pray that the Lord will allow her to remain healthy and put this horrible disease behind her completely.
Thanks so much for all you have done for us. Prayer is such a powerful tool and we appreciate all of the prayers that are going up for us.
Saturday, November 09, 2002 at 02:58 PM (CST)
Thankfully, this has been a rather uneventful week. Morgan seems to be feeling okay. She is still feeling the after effects of the chemo and gets sick on her stomach occasionally. However, this is still much better than what we went through after the third round of chemo.
Morgan's surgery is tentatively scheduled for the week of November 18th. I was supposed to find out an exact date when I took her to clinic on Thursday. But there was a big fiasco with her blood sample getting lost and it totally slipped my mind to ask about it. At the clinic, they have a machine similar to the drive-thru at banks which sends the samples to the lab. Morgan's sample was put into the machine at one end and never came out of the other. From what I understand, there were employees searching all over the hospital trying to find this missing sample. I waited for almost three hours before they told me it was missing and another hour before they finally gave up the search and pricked her finger again. But the way I look at -- if this is the worst thing that happens to me during the week, then it is a pretty good week. We will be heading back to clinic on Monday, so hopefully I will get an exact date then.
The good news is that we are still at home (five days now). Everyday in which we are not in the hospital is a precious gift from the Lord.
We want to send out a special "thank-you" to Mrs. Marlene Smith's second grade class at Sandy Ridge Elementary School. We met Mrs. Smith a few days after Morgan was diagnosed. Her son was diagnosed with neuroblastoma in infancy, and is doing well now. Mrs. Smith and her wonderful students sent Morgan a care package. She was so excited to get such a big package in the mail and even more excited when she found that the big box was filled with her favorite thing -- books. There were lots of other great things in the box too, including a backpack on wheels that Morgan has been pulling around the house quite frequently. This package truly made Morgan's day and she will get much more enjoyment out of it in her many stays at the hospital.
Thanks so much for continuing to keep Morgan in your prayers. The Lord has truly blessed me recently with such a feeling of peace. It is almost like He is personally telling me that everything is going to be okay. I know that this is a direct result of all of the prayers that Morgan and our family is receiving. This week we need the following prayers:
1) Please pray for the Lord to begin preparing Morgan's body for surgery. She is not eating really good right now and we know that she needs to be strong when she has her operation. We need Him to provide her with strengh.
2) Pray for God to grant the surgeons the skill and wisdom they will need to make this surgery successful. Ask the Lord to make it possible for all of the cancerous lymph nodes to be removed.
3) Continue to pray for the condition of Morgan's bone marrow. Let's all stand in agreement that Morgan's bone marrow will be found to be totally healthy.
4) Pray for the Lord to guard Morgan's body against any infections that will cause us to return to the hospital. Life is so much easier for us when we are able to stay at home.
5) As always, please continue to lift all the children with neuroblastoma to the Lord in prayer. I have learned of another little boy through this wonderful website. The names of these children are: Sarah, Henry, Jacob, and Harrison. And please remember little Grace. Pray that the Lord will continue to keep her in good health.
I will do another update as soon as I learn something definite about Morgan's surgery. Our entire family thanks you so much for supporting us through prayer during this difficult situation. I can't imagine how much more difficult it would be if we did not have the prayer and support of our family, friends, and even strangers.
Monday, November 04, 2002 at 08:13 PM (CST)
Round number 5 of chemotherapy ended late Sunday night. We were able to leave the hospital on Monday afternoon. We would like to thank everyone who prayed for this round of chemo to be easy on Morgan. For the most part, it was. She was a little sick, but nothing compared to the experience we had the first time she had this set of drugs.
We checked into the hospital on Halloween. Personally, I was dreading this because I thought it would be very depressing. However, the staff at Brenner really goes out of their way to make the holidays special for the children. Morgan dressed as a ballerina and was able to go trick-or-treating to various stations throughout the hospital. Afterwards, they had a Halloween party. She really enjoyed herself.
We finally received the results of Holden's urine tests. Thank the Lord -- they are absolutely normal. This is proof that our God does not give us more than we can bear. We will probably have him tested again in six months or so. There really is not a reason to believe that Holden will get this horrible disease, but we feel like it is better to be safe than sorry.
What is the next step? As soon as Morgan's counts recover from this round of chemo, she is going to have surgery to remove the lymph nodes that were affected by cancer. From what I understand, this will be an intensive surgery. She will need a lot of prayers during that time. The doctors will also tap her bone marrow to make sure the chemo is doing its job there too. All signs seem to indicate that her bone marrow is improving but we would still like a lot of very specific prayers for the condition on her bone marrow. If by chance the chemo is not working on the bone marrow, there really would not be much more the medical community could do for her.
The team of doctors decided to do another CT scan of her chest right before she has surgery in order to examine that place on her lung. Again, we need for God to make this place totally disappear before the next scan so that this is not even an issue anymore.
Jerry and I would like to thank our friends at the Thomasvile Moose Lodge. They held a very successful benefit for Morgan this weekend. It was obvious that these people put a lot of effort into this event and that they care about Morgan. One blessing that Jerry and I have had since this ordeal began is that we have noticed that there are so many wonderful people in this world. Everyone has been so kind to us during this difficult tiime in our lives. We hope someday to be able to repay all of the kindness that has been shown to us.
We have some sad news to report. Morgan's little friend, Anthony, passed away at his home Saturday. This little boy touched so many lives during his short time with us. It is comforting to know that he is now with the Lord and will never again suffer. Pray for his family and all of the other families who are suffering because of neuroblastoma.
Neuroblastoma is such a hard disease. We know that the Lord is so much stronger than this terrible illness. This is why we need so much prayer for Morgan. Please pray that:
1) The spot on her lung will totally disappear before Morgan has her next CT scan and that the cancer will have spread to no where else on her body.
2) Morgan's bone marrow will show definite signs of healing. We can ask the Lord that Morgan's bone marrow be totally perfect -- we believe in miracles, right?
3) The surgeons who will work on Morgan will be given skill and wisdom by God. Please pray for the Lord to guide them in all the decisions they make and all they do during surgery.
4) Morgan will have total and complete healing of this disease. We are asking the Lord to allow her to survive this ordeal and for the cancer never to relapse.
5) Continue to pray for all the children who have neuroblastoma: Sarah, Henry, and Jake. Also pray for Grace. Grace had neuroblastoma; please pray for the Lord to keep her healthy.
I will try to do another update this weekend. Thanks for your love and support. We thank you most of all for your prayers -- we know that these prayers will save Morgan.
Friday, October 25, 2002 at 08:15 PM (CDT)
We were released from the hospital on Thursday afternoon. We were all ready to go, especially Morgan. They gave her medicine to sedate her for the bone scan, and in typical Morgan fashion, she was reacting to it. She was angry and screaming that she wanted to go home. Fortunately, the doctors agreed that her fever had subsided and her white counts were on the way up, so she was free to leave.
The test results are in and it seems to be good news. The CT scan revealed that Morgan's lymph nodes had decreased about 50%. The bone scans also showed that the chemo drugs seem to be doing their job, and the bone tumor on her pelvis is shrinking. The only thing that concerns us is that the CT scan also found a spot on Morgan's lung. This spot did not exist when Morgan was originally diagnosed with cancer. The general consensus from the medical team is that it is not cancerous, they say it looks more like an inflammation or infection of some sort. I guess what made me nervous were the words "but it is something we need to follow." In the medical world, this is not what you love hearing. They put Morgan on an antibiotic and will do another chest x-ray when we check back in for chemo. This is something we certainly need for you to pray about.
The third test that Morgan had was a urine test. There is a test that can be done to detect neuroblastoma. (This is the same test that Holden will have). I am not really sure what the numbers mean, but I do know that the lower they are the better. When Morgan was initially diagnosed, the count was 200. When she was tested this week, the number had reduced to 20.
We have a lot to praise our Lord for. He is using the chemo drugs to cure Morgan. We just need to keep asking Him for complete healing and no chance of this nasty disease ever popping up again.
The oncologists are in the process of meeting to discuss if Morgan will undergo surgery to have the lymph nodes removed or if they will see if the chemo will totally get rid of the cancer that is in them.
Since we were in the hospital, Holden did not undergo his urine test. We are going to try to do that on Monday.
Morgan has a big weekend ahead of her. Tomorrow is Smith's (Morgan's cousin and very best friend) birthday party. When we were sent to the hosptial earlier in the week, we were very worried that Morgan would not be able to attend. Thank the Lord -- we are out of the hospital and have been given the green light to attend.
Our family is still in need of a lot of prayer. We are anxious about the spot on her lung and just beginning to see all of the sadness that goes on in pediatric oncology wards. This last stay was very difficult because we learned of the death of a boy we knew and another whom we knew of. Please pray for Morgan and the rest of the family:
1) Please pray that the spot on Morgan's lung is nothing more than a simple infection that will clear up with the antibiotic she is taking.
2) Please pray for the team of physicians to make the right decisions regarding if and when to remove her lymph nodes that have been affected by cancer.
3) Please pray for strength for all the members of our family. As I said before, the stress of dealing with all of this is a bit difficult at times. We need to Lord to carry our burdens for us.
4) Please pray for God to prepare Morgan's body for the next round of chemo, which will start on October 31. Pray that the drugs will destroy her cancerous cells, but her healthy cells will be spared and she will suffer no negative side effects. She will be having the same set of drugs that made her so sick back in the middle of September.
5) Finally, pray for Anthony. Anthony also has neuroblastoma. The doctors have decided that medically nothing more can be done. He is going home from the hospital and placed under the care of hospice. The Lord is now the only hope that Anthony has. Let us all stand in agreement for the Lord to heal little Anthony.
We believe in a God who anwers prayers. Your prayers have already made such a difference and we thank you for continuing to pray. May God bless you all.
Tuesday, October 22, 2002 at 07:33 PM (CDT)
Hi Again -- We just wanted to let you know that the plans have changed somewhat. Morgan will undergo testing tomorrow. The doctors figured that since we are already in the hospital, we may as well go for it. Please pray for the Lord to reveal that He has worked a miracle in Morgan's body and she is totally free from cancer.
We hope to be sending you some good news shortly!
Monday, October 21, 2002 at 05:55 PM (CDT)
Hello Everyone!
We just wanted to let you all know that Morgan is back in the hospital. Last night around 5:30, her temperature started to rise. She was acting like she felt pretty good, so we were a bit hesitant in calling the doctors. Her temperature fluctuated between 98.7 and 100.4 for most of the night. 100.5 is the magic number, so we were trying to wait it out. Around 2:00 this morning, Morgan woke her daddy up calling for him. When he went in, her temperature had jumped to 100.8. Before we left for the hospital, it was 101.
Before 5:00 this morning, we had dropped Holden off with Grandma and Grandpa Morgan and were on our way to the emergency room. We checked into our room around 6:30. In typical Morgan fashion, when they checked her temperature in the ER, it was 98.7. However, it has been going up and down most of the afternoon.
Morgan is still in very good spirits. She is not as active as usual, but I would not say that she is acting like she is feeling bad. All of her blood counts were very low. Today she received platelets and whole blood.
Now for the question on everyone's mind (including us) --
When will we get to go home? The answer to that question is whenever Morgan's fever breaks and her counts start to rise. We are hoping to be here just a few days, but we will see what the Lord has planned for us.
We are still in need of prayer. Our needs include:
1) Pray that Morgan's blood counts will come up, her fever will subside, and we will get home soon.
2) Pray for Holden since we are now in the hospital. This means that he is missing out on some time with Mommy and Daddy. Pray for my parents too, I think Holden has the ability to zap them of their energy.
3) Pray for complete healing. We would like everyone to pray that Morgan's tests on the 29th will show that she is totally free from cancer.
4) Pray for the entire family. It is hard to stay strong in the hospital. There is so much sadness here that at times it gets hard to deal with.
5) Pray for the Lord's mighty hand in the timing of all of Morgan's procedures. Specifically, pray that when Morgan is ready for transplant, there will be a space available for her.
Saturday, October 19, 2002 at 02:14 PM (CDT)
The Lord continues to bless us each and every day. Morgan has had a wonderful week. I always evaluate how good Morgan is feeling by how tired I am at the end of each day, and I have been totally exhausted every night since we came home from the hospital.
God has answered another prayer. Yesterday, I received an email from Tiffany Bradshaw. She did Morgan's pheresis. Tiffany stated that the results are in and Morgan's stem cells are free from cancer. I was in a bit of shock when I first got the email because they only words I saw were "negative and I'm sorry". What the message actually said was "The test results were negative. I'm sorry it took so long to get the results back to you." In this case negative is actually positive because it means there were no cancerous cells present. Praise the Lord!
Morgan has had quite a week. On Wednesday, she went to a real dance class. My cousin's wife, Gena Surratt, owns a dance studio, and she has agreed to give Morgan private lessons. Morgan had a blast. She especially enjoyed looking at herself in the wall mirrors. She also really liked the fact that she got to dance to The Wiggles, a favorite music group for all of the people under the age of 5. The other highlight of Morgan's week was a trip to the Lazy 5 Ranch with Grandma and Grandpa Morgan. This was to make up for the fact that Morgan had to miss the Dixie Classic Fair. The Lazy 5 Ranch is a really neat place, especially for children who can't be in big crowds. It is like a zoo that you drive through. The animals just walk right up to the cars and let you take a nice look at them. We saw zebras, camels, giraffes, and lots of other animals. Morgan especially loved the ostriches. I think it had something to do with the thrill of being afraid because the ostriches were kind of aggressive and would have stuck their heads inside the car given a chance, and they were not very attractive at such a close view.
The only negative thing that happened this week was that Morgan had to have a blood transfusion on Wedneday. This is an all day process so we had to stay at the hospital from 8:30 am to 4:30 pm. By 3:00, Morgan was crying and begging me to let her go home. That was a very long and tiring day.
Speaking of blood transfusions -- there will be a blood drive in Lewisville on November 2. It is being sponsored by the area churches. I found out last night that the Red Cross received a grant so they will also be doing free bone marrow testing at this blood drive. This procedure normally costs about $75. This would be a great time for anyone who would like to get on the national bone marrow donor's list to do so. If you are interested and would like more information, please email me and I will give you the name and number of someone to contact.
The doctors have finally made a decision regarding Morgan's reassessment. It will be on October 29. She will have a bone scan and a CT scan. We have also decided to have Holden tested for neuroblastoma. There isn't really a proven genetic link to this type of cancer, but doctors have not ruled it out either so for our own peace of mind, Holden will have a urine test on Thursday.
Please continue to pray for Morgan.
1) Please pray that the Lord will protect her from any fever or infections and we will be able to stay out of the hospital until her next round of chemo on October 31.
2) Pray for the Lord's perfect timing. Pray that when Morgan is ready for transplant, there will be a space available at Duke.
3) Please pray for Morgan to have good results from her tests. Pray that the Lord will have already healed her from her cancer and this will be evidenced by the tests.
4) Pray that Holden's tests will show that he is totally healthy.
5) Please continue to pray for Sarah, Anthony, Henry, and Grace. These children have or have had neuroblastoma. Pray for the Lord to watch over them at all times.
We thank you all so much for your continued prayers. They are really making a difference in our lives.
Saturday, October 12, 2002 at 07:22 PM (CDT)
We came home from the hospital today and round #4 of chemo is officially over. This trip was very different from our last round of chemo, which is a great thing. The Lord really heard our prayers and blessed Morgan with no nausea or vomiting. I am beginning to wonder if they gave her the right stuff, since she is feeling so well. Actually, that is just the work of our Lord.
Morgan was full of energy during her most recent hospital visit. In fact, she totally wore me out. We were all over the hospital on Friday. We went to the rooftop playground, the 8th floor playroom, the 9th floor playroom, the library, the video wall, and the trains. I finally had to drag Morgan back to her room because I was totally exhausted. I joked that her hospital visits are easier when she is sick and wants to stay in bed, but it was really so nice to be able to try to keep up with her while pushing an IV pole.
The only exciting thing that happened this time was that her IV sprang a leak when a clamp came undone. I would guess that it ran for about 45 minutes before we noticed it. The good news is that she is being treated so aggressively that the lost medicine should not matter. The bad news is that the medicine ran all over me. I had to say good-bye to a pair of jeans because they had to be confiscated and destroyed. There was talk that I would have to be sent to the ER since the medicine contacted my skin. (Makes you wonder why I let them put it into my daughter's body?) Jerry could not understand why I had a hard time saying adios to the jeans -- but they were a pair from my college days and I had them longer than I have known him. The hospital said they would reimburse me -- but can you really replace a good old pair of jeans?
Morgan was able to make it to the movies last week before we checked into the hospital. We went and saw Jonah with her cousins, Kate and Rebecca. She was really into it for the first hour, but during the last 30 minutes she kept trying to get me to play Simon Says with her and complained loudly when I would not. She eventually had to be removed from the movie and only allowed to return after promising Mommy that she would be quite for the duration of the movie. Fortunately, when we returned to the theater, there was only about 10 minutes left in the movie.
The oncology team has not decided yet what types of tests will be done on Morgan to see if the chemo is working. Normally, kids are reassessed to see if their tumors have shrunk enough to be removed. However, the Lord was looking out for Morgan and she was able to have her tumor removed only two days after she was diagnosed. It hit me the other day that as soon as we found out Morgan had cancer, we prayed and prayed that the tumor could be removed. After the surgery, Dr. Letton told us that it was one of the easiest tumor removals he has ever performed. This was after we were originally told that the tumor probably could not be removed until after chemo has reduced it. This is just another example of how wonderful our Lord is and how He wants to answer our prayers -- we just need to ask Him.
God is so good. Morgan has not slowed down since she recovered from the third round of chemo. We certainly thank Him for His grace and mercy.
Our prayer requests for this weeks are:
1) Please pray that Morgan will continue to be in such good spirits and her appetite will remain robust. It is so refreshing to all who are around her to see her feeling so well.
2) Please pray that the Lord will protect her from any fever or infections and we will be able to stay out of the hospital until her next round of chemo on October 31.
3) Pray for her stem cells that are awaiting transplant back into her body. Pray that God will bless each and every one of those cells and make them healthy, free from cancer, and perfect to put back into her body when she has her bone marrow transplant.
4) Pray for the Lord's perfect timing. Pray that when Morgan is ready for transplant, there will be a space available at Duke.
5) Please continue to pray for Sarah, Anthony, Henry, and Grace. These children have or have had neuroblastoma. Pray for the Lord to watch over them at all times.
(Henry had his bone marrow transplant on Wednesday and his mother reports that he is doing well -- Praise the Lord!)
Sunday, October 06, 2002 at 01:41 PM (CDT)
We are currently setting a record. We have been home for one week and three days. This is the longest we have gone without a trip to the hospital since July 31. Praise the Lord.
Morgan is in terrific spirits. She has kept herself very busy this week laughing, playing and just being a three year old girl. Last week, we had to go to clinic on Monday, Thursday, and Friday. She had to have platelet transfusions on Monday and Friday. Her white counts have been down, but so far there have been no fever or infections associated with this. Between Thursday and Friday they came up from 2.0 to 2.8, so this is a good sign that things are improving and she will be ready for chemo on Thursday.
The Lord is certainly hearing our prayers regarding Morgan's appetite. She is eating like she has never eaten before. She actually asks for certain food now, whereas in the past, eating was something she only did upon request from Mommy and Daddy. Her new favorite foods are bacon, eggs, and toast. She is asking for this all the time. She is also eating a lot of green peas, spaghetti, and goldfish crackers. The Lord is seeing to it that Morgan will not have to have the feeding tube put back in anytime soon.
Our agenda for this week is to go to clinic on Monday and check in for chemo on Thursday. We are going to try to take Morgan to the movies sometime this week to see the new Veggie Tales movie. Morgan has never been to a theater before so this should be quite an adventure.
Morgan was signed up to take dance classes this fall. Unfortunately, she was not able to attend a single class before she was diagnosed with cancer. To make up for it, we ordered her a dance instruction video so she could have dance class at home. Thursday night, she dressed up in her leotard and danced. She was much more interested in just twirling around in her tutu than she was in the video, but it was still cute to watch. I have posted a picture of her in her tutu on this site, so check it out.
Our prayer needs for this week are:
1) Please pray that the Lord will protect Morgan during her chemotherapy. Please pray that all of the cancerous cells will be destroyed and all of her healthy cells will be protected.
2) Morgan's condition will be reassessed sometime in the next week. Please pray that the Lord has already healed her and not a trace of cancer will be found anywhere in her little body.
3) Please pray that the stem cells that were extracted from Morgan during pheresis are healthy and are in perfect condition to put back into her body during her bone marrow transplant.
4) Please pray for Holden during the coming week. When we are in the hospital, he spends a lot of time away from Mommy and Daddy. Please pray that he will have the protection of a guardian angel.
5) Henry, the little boy with Neuroblastoma in California, is undergoing his bone marrow transplant in the next few days. Right now, he is preparing for it. Please pray for the best possible outcome for his transplant.
Sunday, September 29, 2002 at 09:13 PM (CDT)
Yesterday was Holden's first birthday. Uncle Michael and Aunt Ruffin graciously opened their home and hosted his party because our schedule is so up in the air right now. Morgan was well enough to attend her brother's party -- Praise the Lord. This is another immediate answer to our prayers. And while attending a birthday party is small in the whole scheme of things -- it was so nice for Morgan to do something normal for a change. It gave her the opportunity to get out of the house and spend some time with her favorite playmate, her cousin Smith.
Yesterday morning the feeding tube came out again. This was the fourth one in two months. I am taking her for a clinic visit tomorrow and I am going to talk to the doctors about just leaving it out for a while. She has so much more freedom without it. We are going to try to encourage her to eat and hopefully she can maintain her weight and the feeding tube can become a memory. So I guess this is something else we need you to pray for. Please pray for Morgan's appetite to increase beyond what it has ever been in her life. Morgan has never derived a lot of pleasure out of food, so getting her to eat while undergoing chemotherapy is quite a task -- but it certainly is not too much for the Lord to handle.
Morgan had been sick on her stomach ever since chemo started (about a week). Surprisingly, as soon as the feeding tube came out, the nausea and vomiting stopped. We are not sure what the correlation was, but we are fairly certain that something about that tube was making her sick on her stomach.
She seems to be perking up a little bit each day. Tonight we actually went for a walk around the block and stopped for a few minutes to swing at the neighborhood playground. She was excited about the new tennis shoes that I bought for her -- they have Dora the Explorer on them. I think the only reason she agreed to go on the walk in the first place was to wear her new shoes. But once we got started, she really enjoyed herself.
The next thing on our agenda is round four of chemo. Right now, this is scheduled for October 10. Of course this is subject to change depending on blood counts, fevers, infections, etc. Of course, it is our prayer that everything will remain on schedule. After round four, Morgan's condition will be reassessed. This will be our first opportunity to see if the chemo is effective.
Speaking of prayer, our prayer needs for this update are:
1) Pray that Morgan will have an increased appetite
2) Pray that the Lord will protect Morgan from any infections, fever, or anything that would cause us to return to the hospital before the next round of chemo.
3) Pray that when Morgan has her next set of tests, the cancer will be totally removed from her body. This is a big one -- of course we know that the Lord is capable of this.
4) Pray that the Lord will protect Morgan's healthy cells from any negative effects of the chemotherapy.
5) Please pray for the other children we know who are suffering from neuroblastoma. The names of the children we know are Anthony, Sara, and Henry. Also pray for Grace, who is one year out of transplant. Please pray that the Lord will continue to provide her with good health.
Thanks again for all of your support and may the Lord bless you all.
Monday, September 23, 2002 at 07:04 PM (CDT)
Unfortunately, this last round of chemotherapy was very hard on Morgan. On Saturday, she had a reaction to one of the medicines. Her blood pressure started dropping and they had to discontinue use of the medicine. She was supposed to receive the medicine for two hours, instead she received it for about one hour and fifteen minutes. The doctors assured us that this would not make a difference in terms of her long-range treatment.
The other medicine they gave her for this round made her very sick. In fact, she was so sick that they would not let her leave the hospital on Sunday or Monday. We are hoping that she will be able to go home on Tuesday. The good news is that she will not recieve this medicine during her next treatment, but she will probably have to get it at least two more times (for treatments number five and seven).
Morgan is such a strong little girl. She has not complained a single time about everything that has happened to her. They were able to remove the pheresis line very easily. I was quite surprised because there was really no more to it than just removing stitches. It did not make Morgan happy to have this procedure done to her. She was quite polite in letting Dr. Letton know she was not happy because she kept repeating, "Your finished. Thank you."
Please pray that Morgan's nausea will subside so we will be able to come home and we can spend some time together as a family. Whenever we are in the hospital, Holden gets short changed in the time he gets to spend with Mommy and Daddy. Also, pray that these chemo drugs are doing their job and taking all of Morgan's cancer from her so that it will never return again. We also need prayer that Morgan's stem cells are healthy and cancer-free and are perfect to be returned to her body for her bone marrow transplant. Finally, please pray that the Lord will time everything perfectly so that Morgan will be able to receive the bone marrow transplant at the time she needs it.
We really appreciate all of the notes of encouragement that are being left on this website. But most of all, we appreciate the fact that Morgan is being lifted in prayer by so many people each and every day. With so many people praying, the Lord will certainly hear us.
I will update the page again this weekend. God bless you all!
Monday, September 16, 2002 at 07:04 PM (CDT)
Morgan had a wonderful weekend at home with no fevers or illness of any kind -- Praise the Lord. So where are we going from here?
On Thursday we will report back to the hospital for round three of chemotherapy. At this time they will also remove the pheresis line since we will not be needing it again. Her stem cells will be tested to make sure there are no cancerous cells, but we will not get these results for about six weeks. I assume that if the stem cells show traces of cancer she would have to have another line placed and go through pheresis again.
We are still in need of prayer and we thank all of you who are lifting us up to the Lord. We can feel your prayers carrying us. Please pray that each and every stem cell that was collected during pheresis is healthy and that there is not a trace of cancer anywhere among them. I believe Morgan's next round of chemo will actually last four days. Please pray specifically on Thursday through Sunday that the Lord will use the chemo drugs to heal Morgan of cancer and that the drugs will target only the cancerous cells and will ignore all of her healthy cells. Pray for the Lord's protection against side effects from the chemo. Also, continue to pray that the Lord will time everything perfectly so that Morgan will receive her bone marrow transplant at the exact moment she needs it.
Thanks for all you are doing for our family and God bless you all! Look for our next update after we return home from the hospital (Sunday hopefully).
Friday, September 13, 2002 at 07:54 PM (CDT)
Morgan's surgery on Thursday went well. They started it right at 7:30 am and were finished before 8:15. She recovered quickly and we left the hospital by noon. They sent us straight to Duke to have blood work done before pheresis.
The pheresis procedure went even better than we expected. They harvested enough stem cells on the first try so we will not have to do it again. It is very rare to do this, especially on a child as small as Morgan. God is so awesome. When we left Duke they told us to return on Monday. As we were heading home, we received a phone call and they told us they had all they needed and we would not have to return. After the phone call I told Jerry that this is just another example of how the Lord answers our prayers.
The only complication that we experienced was with her feeding tube, which runs through her nose into her intestines. Morgan pulled it out on Wednesday night. We did not really see this as a problem because they like to replace them once a month and we had already asked the surgeon to put it back in while she was in surgery. It was placed but he was not able to get it down into the intestine. When we tried to hook her up to her feeding line on Thursday, nothing would go down the tube. We went to Duke a little early on Friday to see if they could fix the problem. It turns out that the line had a kink in it. They had to run a wire down Morgan's nose to straighten out the line. Morgan did not enjoy this procedure at all, but now the tube is where it needs to be.
The cells that were taken out of Morgan today will be tested to make sure there are no cancerous cells in the batch. Please pray that the Lord will make each of those cells healthy and perfect to use for her bone marrow transplant. The phersis line that was placed in her on Thursday is a line that comes out of her body. This makes it a high risk for infection. Please pray that the Lord will protect this line from all forms of infection and that he will give Jerry and me the ability to take care of the line. We will have to clean it very carefully.
Thanks again for all of your support and prayers. May the Lord bless you all!
Wednesday, September 11, 2002 at 04:41 PM (CDT)
I finally have an update for everyone. The Lord answered our prayers and Morgan's white blood count came up enough and she is going to have her surgery in the morning at 7:30. The surprising news is that as soon as she recovers they are sending us to Duke. Hopefully, we will get there in time for blood tests on Thursday night and pheresis will start first thing Friday morning. They did a blood test here today and found that her blood is really good right now for harvesting stem cells so they want to do pheresis as soon as possible. We will not be spending the weekend in Durham. If we have to go back, we will return on Monday morning.
Now for our prayer requests. Please pray that the Lord will protect Morgan during her surgery and that He will allow her to recover fairly quickly so that we can get to Duke as soon as possible. Also, pray that her pheresis will be successful and they will get all of the stem cells they need after one session. The plan is to collect stem cells every other day for 3-5 hours until they have enough. Some patients are fortunate enough to get this done in one session and that is what we will ask to Lord for in Morgan's case. Finally, pray that each and every stem cell that is harvested from her is healthy and cancer free. We certainly do not want to go through this long process and find that the cancer is put back into her when we go to transplant.
We know that our prayers are being answered. The Lord being so good to us. Please keep praying and know that we are so thankful for these prayers.
May the Lord bless you all!
Friday, September 06, 2002 at 08:18 PM (CDT)
I sat down on Thursday night and started doing an update for everyone. As I was typing it all in, Morgan woke up calling for me. She was very congested and felt warm. I took her temperature, and it was 101. Therefore, we had to return to the hospital. Right now she is in the hospital receiving antibiotics and waiting to see if her blood culture shows any infections. The doctors told us to plan on staying through the weekend.
Otherwise, Morgan has been doing okay all things considered. We went to the oncology clinic on Thursday and her blood counts were low, but that is to be expected one week following chemo. Her surgery to place the pheresis line is contingent upon her blood counts recovering. Please pray that Morgan's blood counts will come back up and we will be able to continue with our plans as they are scheduled.
She has been very active during the last week. On Wednesday, she decided she was ready to visit Grandma and Paw-Paw's house without Mommy. This was the first time she has voluntarily left my side since July 31. Her Paw-Paw made her a CD of some of her favorite tunes ("Miss Grace", "Rocky Top", and "Lollipop" to name a few). Morgan loves to play it and dance in the kitchen. However, Morgan believes that dancing should be a group activity. Therefore, our family spends a lot of time dancing in the kitchen. Even Holden is learning how to "cut a rug". I am just happy that our kitchen does not have big windows.
Please continue to pray that the chemo drugs will target only the cancerous cells she will not suffer any negative side effects as a result of her treatment. Also pray that our Lord will time everything perfectly so that Morgan will be able to receive her bone marrow transplant on the very day that she needs it.
I will do my next update once we learn if Morgan will have her sugery on Thursday. Thanks to everyone for your continuing support and prayers for our family.
Saturday, August 31, 2002 at 07:53 PM (CDT)
Morgan's second round of chemotherapy went very well. She was sick a few times in the morning, but otherwise in great shape. On Thursday night, she had a reaction to some medicine and became very agitated. She was very loud and unruly until around 4:00 am, and then she drifted off to sleep. She slept until the early afternoon on Friday. This was our only negative experience.
During most of our hospital stay, she preferred to be out of bed and playing. She even ate some while in the hospital. We were able to check out on Saturday. This was delayed slightly because she had to receive a blood transfusion before we could leave due to her hemoglobin being low.
It seems Morgan's attitude toward being in the hospital is changing. During her first two stays, she was very unfriendly to all the doctors and nurses and would scream anytime someone came into the room. During this last stay, she actually played with the nurses and allowed them to work on her. I can't say that she has warmed up to the doctors yet, but perhaps it will happen in time.
Thanks to everyone who is posting messages of encouragement to us. We read them all and they mean so much to us. Also, thank you to our friends who have provided much needed services to us (meals, house cleaning, lawncare, etc.). We would especially like to thank everyone who is helping take care of Holden. It means so much to us to know that he is being loved and well cared for while we are separated.
Morgan returns to the hospital on September 5 to visit the oncology clinic. We will do an update after that trip. Also, she is scheduled for surgery on September 12 to have her pheresis line placed.
Please continue to pray daily that Morgan will be protected from infection as her blood counts begin dropping and He will spare her from negative side effects from chemotherapy. Also, please pray for the Lord's favor in timing Morgan's trip to Duke for her transplant.
Tuesday, August 27, 2002 at 08:30 PM (CDT)
On Monday, August 26, we traveled to Roxboro, NC. Our friends, Richard & Joyce Sugg, opened their home to us so we would have an easy trip to Duke on Tuesday.
On Tuesday, we met with Morgan's nurse practioner, Tracy Kelley, at Duke. A number of blood tests were done on Morgan and she was given a physical. We also had to give a complete medical history.
This trip to Duke was a chance for us to have some of our questions answered. Our next trip to Durham will be in a few weeks. Morgan will undergo a process called pheresis. This is basically a harvesting of her own stem cells to be used later as her bone marrow transplant. The plan is to harvest enough stem cells to be used for two transplants (one is a back-up). During pheresis, she will be hooked up to a machine and her blood will be extracted, filtered, and put back into her body. A special line will be surgically placed into her at Brenner's in order to do this procedure. Pheresis takes 3 to 5 hours and will be done every other day until enough stem cells have been harvested. This means we will be in Durham anywhere from 3 to 14 days.
We have some special prayer requests:
1) On Thursday, Morgan begins her second round of chemotherapy, which will last three days. Please take some time on Thursday, Friday, and Saturday to pray that the Lord will see to it that the drugs she is given will target the cancerous cells and spare the healthy cells in her body. Please ask that He spare her little body of any side effects from these drugs. Possible side effects are: heart damage, hearing loss, damage to other vital organs, nausea, etc.
2) The facility at Duke has 16 beds, which are full most of the time. There is a possibility that when Morgan is ready for her bone marrow transplant, there will not be space available in the hospital. Please pray daily that our Lord will work out the timing on this so that when Morgan is ready for transplant, there will be room for her in the hospital.
Again, our family would like to express gratitude to all of our friends, family, and even strangers who are supporting us during this time. The Lord is truly meeting our needs even before we know what they are. We can feel everyone's prayers carrying us.
People frequently ask what they can do to help. There are two things that immediately come to mind. The first is to become a blood donor. Morgan and many other people undergoing chemotherapy receive numerous blood transfusions, and while your blood may not directly be given to Morgan, it will help someone. The second is to consider volunteering at the Ronald McDonald Room at Brenner's. This is a special room designed to give parents a break from their children's bedsides. It is open daily from 9:00 am to 9:00 pm, but it doesn't open when there is no volunteer to staff it. Volunteers work in 3 hour shifts. Their main duties consist of sitting at the welcome desk and signing people in and out of the room. This room provides a great benefit to the families at Brenner's and it is very discouraging when the facility is closed.
Look for our next update around Sunday, September 1.
Wednesday, August 21, 2002 at 03:17 PM (CDT)
Morgan was released from the hospital today. She is no longer running a fever and the chicken pox seems to have run its course.
I was afraid that we would have to stay another night which would be one more night of inactivity for her. Morgan did not get a chance to be active in the hospital because she was quarentined to her room due to the infectious nature of chicken pox. I was concerned about her lack of activity since she was basically bed-ridden the whole week.
When we got home today, she did not let the week of inactivity slow her down. She has been going up and down the stairs, playing with her toys, helping unpack, and being a little girl again. It is a beautiful thing to see her playing and running around without fear of a nurse or doctor coming it to see her (I understand that they are trying to help but for some reason, a three year old doesn't seem to understand their good intentions). I praise God for giving us this brief stay at home before her next admission.
As it stands now, we will go to Duke next Tuesday to meet with representatives and to let them take some blood samples. Morgan will be admitted to the hospital again next Thursday for her next round of chemo-therapy.
Again, Allison and I (as well as our families) thank you from the bottom of our hearts. We have gotten so much support. We thank God everynight for the kindness people have shown our family.
P. S. I added a new picture today. It is our family portrait which was taken on July 26, 2002. This was a Friday night. Morgan was diagnosed with cancer the following Wednesday.
Sunday, August 18, 2002 at 01:20 PM (CDT)
On Monday, July 29, 2002, Morgan started limping. On Tuesday, Morgan would not walk unless she absolutely had to. Wednesday morning, Allison took her to the doctor's office (her third trip in two weeks-one for a fever and the other was her three year check-up-A clean bill of health no less) They could not find anything wrong with her.
By Wednesday afternoon, Morgan could not walk. Allison and I took her to the emergency room thinking that she had had an appendicitis. The doctors could not verify this through their examination so they ordered CT scan.
The CT scan revealed a large mass growing between her stomach and kidney. Around 10:00 PM, she was diagnosed with neuroblastoma. She was immediately hospitalized.
On Thursday, Morgan had x-rays and a bonescan performed, On Friday, they performed exploratory surgery. They were able to extract the tumor. This seemed like a great victory until a test revealed that cancer had spread to the bone marrow.
On Tuesday, she started chemotherapy. This lasted until Thursday. Due to nausea and fever, Morgan was not released until Sunday.
On Wednesday, August 14, Morgan was readmitted due to fever. Turns out that the chicken pox vaccination that she received two weeks earlier has caused her to develop chicken pox.
Today is Sunday, August 18. Morgan is still hospitalized in an isolation unit because the doctors do not want the chicken pox to spread to other patients.
Allison and I would like to thank everyone for all the support that we have received so far. Our friends and relatives have been there to help us when we need them and I don't know where we would be without the support of our church, River Oaks Community Church.
Allison and I ask for one thing from anyone visiting this page: Please continue to pray for Morgan's recovery and for strength for Allison and me.
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