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Saturday, October 30, 2004 07:28 PM MST
Lauren has just finished her last oral dose of chemotherapy. She still has not gotten sick from it. Tomorrow, she starts the Cytoxin, which is given intraveneously. She will receive this for four days, then she gets one day of IVIG, which is an immunosuppressant drug. November 5, 2004 is her scheduled transplant day.
The speech therapist visited Lauren today and has agreed to see her twice a week starting next week. Therefore, she is getting OT, PT and ST while she is here in the hospital.
Our prayer for Lauren today is that she is able to make it without needing steroids. Please help us pray this prayer. Also, pray that her cells engraft quickly without side affects. Thank you all for your continued prayers.
Love,
The Reeds
Friday, October 29, 2004 08:52 PM MST
Today was trick or treat day at the hospital. The hospital invites all the children that have had procedures done in the past years to come back for trick or treating at the hospital and since Halloween is on Sunday, they did it today. Lauren dressed up as an Arizona Cardinals cheerleader and I have to say that she blows away the competition. She is by far the cutest cheerleader out there. She really enjoyed it and collected lots of candy. Dr. Graham's partner, Dr. Andreansky (Dr. A) dressed up as a scary ghoul. Lauren didn't like it at all and it obviously made her very uncomfortable, so he removed the mask right away.
Lauren had a physical and occupational therapist visit her today for assessment. The good news is that she will receive OT twice a week and PT once a week starting next week. She will also have a visit from a speech therapist on Monday. We hope that she is able to get that as well.
Lauren had another successful day. She is doing so well with the chemo and has not gotten sick yet. She is still in great spirits and making the most of each day that she is there. She sings all of the time. We love hearing it and cherish it. We got her out in the hall for three walks today and she did very well, walking over one mile combined. 16 laps combined in the bone marrow ward is one mile and the doctor encourages that they walk one mile per day to prevent pneumonia.
We took some pictures and will post them on the website by Monday for all to see. May God bless you all as you continue to pray for our family during this time.
Brian
Wednesday, October 27, 2004 09:56 PM MST
Lauren has made it through the first 24 hours of chemotherapy. The first four days is given orally and even though the tube was inserted last night in preparation for her first dose at 10:00 p.m., Lauren decided that she didn't want it and pulled it out about 9:00 p.m. So, Carrie has been giving it to her orally using a syringe. So far, Lauren is doing really well.
Lauren is very active and in good spirits. She loves to see her daddy walk into the room and she cries when he leaves (but ony a few seconds for the most part). We are getting accustomed to the requirements of her care, but it is all being done with LOVE for her. We are learning new things about her care every day.
Thanks for all of your prayers. God bless.
Brian
Tuesday, October 26, 2004 02:17 PM MST
Lauren was admitted to the hospital yesterday and at about 10:00 a.m. her central line was inserted. This risky procedure required her to be put under an anesthesia as the tube went into her heart. Everything went well, and she seemed to feel fine the rest of the day. She doesn't seem bothered by the tubes sticking out of her chest. Other than being disturbed every few hours throughout the night by nursing staff taking Lauren's vitals, she and Carrie had a fairly peaceful night.
This morning, Lauren received an anti-seizure drug in preparation for the first chemo drug she will get tonight. Some of the meds can be given through her central line, and some will be administered "orally" ... which in a toddler's case means a feeding tube threaded through the nose into the stomach. Please send thoughts and prayers for her tonight as she undergoes that procedure.
On Friday evening, Brian stopped at the barber and had all of his hair buzzed off! He wanted to share a "scalp show" with Lauren. He drove down yesterday morning and is trying to settle a few of their belongings into the apartment. He is taking meals to Carrie when he goes to the hospital as she has stayed with Lauren. Nathan is nestled in with his Mia and Poppa (Dennis and Bonnie). They will go down to Tucson frequently, but for the most part they are staying at their home in Gilbert.
The rest of this week will involve a series of drugs each day in preparation for the treatment at the end of next week. Thanks to everyone for your love and kindness, and your continued prayers.
Donna
Monday, October 18, 2004 12:39 PM MST
Carrie, Lauren and Nathan returned home from Duke this weekend (long enough to unpack, do laundry and repack) and will be driving to Tucson on Monday morning. The U of A has an arrangement with an apartment complex close to the medical center for patients' families and they will settle in there this week as Lauren begins her workup. This will include completing some testing that was not done at Duke, and preparations for the procedure. Her central lines will be inserted on Monday, October 25th and chemotherapy starts on Tuesday.
For a year following her procedure, Lauren will be isolated from all public contact. She will be in an isolation unit for about one month. These special rooms on the transplant ward have hepa-filters that remove and replace all the air in the rooms every five hours. All of the air in the whole transplant ward is removed and replaced through hepa-filters every 24 hours. While Lauren is in her room, she will not need to wear a mask, but each day she will be encouraged to walk in the hallway outside her room and during those times, she will wear a mask. The only ones allowed into her room will be medical staff and immediate family.
After about a month, Lauren will leave the hospital and go to live in the apartment adjacent to the hospital. For the first several weeks, she will return regularly (several times a week) for half day treatments and checkups. She is going to get very used to wearing a mask because she won't be able to leave the apartment without one on.
The medical team at the UA headed by Dr. Michael Graham has really impressed us. Dr. Graham is eager to perform UA's first Sanfilippo procedure.
The family still is in need of constant prayers. The stress is exhausting, and we have only just begun this long journey. Pray that we will honor God in all of our dealings with the public and medical staff, and that we will continue to comfort and support one another within our family. Brian will work one more week, and then be able to join Carrie in Tucson. We don't know what we would have done without Bonnie and Dennis this past month as they were able to be with Carrie in Durham while Brian continued to hold down his job in Arizona. He is anxious to be with his family full time. I am trying to work with my employer to modify my work schedule so I can help with Nathan on weekends, and also make frequent trips to Tucson to help wherever needed.
Thank you again to this incredible community for your outpouring of love and support. Thank you for getting the word out about Lauren and for praying for us. Thank you for your wonderful entries in our guestbook and your email messages of encouragement. We are sustained by knowing we are not alone and that Lauren is in all of your hearts.
Donna
Thursday, October 14, 2004 08:52 AM MST
An opportunity has presented itself at the University of Arizona in Tucson (90 miles south of Phoenix) for the same procedure. We discovered through conversations at Duke and with the help of Positive Impact that there is nothing unique about doing a cord blood transplant on a Sanfilippo patient. A cord blood transplant procedure is the same for Sanfilippo patients as it is for Leukemia patients. In addition, Dr. Michael Graham, who will perform the procedure at the U of A, was formerly director of the pediatric transplant clinic at Duke before taking the position at U of A. He teamed with Dr. Kurtzburg on developing this procedure. He is highly respected by the team at Duke. U of A is estimated to be the third largest transplant hospital in the country behind Duke and Minnesota, performing at least 120 cord blood transplants.
Duke is willing to share all of Lauren’s test results with UA, and to work with the medical team at the U of A in sharing their knowledge of transplanting Sanfilippo patients. Lauren will be the first Sanfilippo patient transplanted at the U of A, but certainly not the first stem cell patient transplanted there. A transplant procedure is the same for every metabolic disorder patient, so their lack of experience with Sanfilippo does not affect how they do it. There may be special complications that a Sanfilippo patient has, but as we said, Duke will work with them on how to deal with those.
We are ecstatic to know that Nathan is a perfect match, which gives Lauren the best success for a smooth transplant. We knew that GOD helped Carrie save Nathan's cord blood at birth, even against the doctor's recommendations.
The family is flying home in the next day or two and Lauren will be admitted to U of A on Monday. We feel that this is an answered prayer. Thank you all for your continued prayers and support.
Wednesday, October 13, 2004 05:53 PM MST
Nathan is a perfect match! Lauren's transplant is on.
Tuesday, October 12, 2004 07:06 AM MST
Is Nathan a Perfect Match? Preliminary results of the low resolution testing show Nathan may be the Perfect Match for Lauren's donor. They are doing a high resolution test right now and will know the results sometime today. By the grace of God, it's looking like there was divine intervention in saving Nathan's cord blood against all doctor's recommendation two years ago. By the way, Mister Nathan turned a BIG 2 yesterday. They went to the Marriott in town for his lunch, but apparently he wasn't in much of a mood to celebrate. Maybe he realized that his birthday pales in comparison to what they are going through right now. Oh how I miss him and the rest of the family dearly. God bless them all.
Thank you EVERYONE. We are getting through this one day at a time because of your prayers and support. God bless you all.
Sunday, October 10, 2004 07:41 AM MST
Here is the latest...
Lauren's tests went pretty well this week. Her BAER and VER were normal. However, they indicated the possibility of high frequency hearing loss, which would require Lauren to wear hearing aids. They will perform an ABR this week to determine if this is accurate. Her sleep study went well - no signs of seizure activity. Her MRI indicated mild brain damage typical of Sanfilippo patients, but not as bad as some. This damage could mean that she will not be able to develop mentally, but maybe God has another plan in store. This is all speculatory. Overall, Lauren is in the very early stage of the syndrome and is a prime candidate for the procedure. If Nathan is a match, a bed would be ready one week from this Tuesday. Pray that Nathan is a match. That is our best hope.
Carrie and Bonnie were able to get out together yesterday and see a movie while Dennis watched the kids. It is the first time Carrie has watched an "adult" show besides cartoons and kids tapes. They have always had to turn off the lights and go to sleep at about 8:00 p.m. with the kids or they just stay awake. So no nightly television. Dennis went to work out in the fitness center at the hotel yesterday afternoon and while I was talking to Carrie on the phone, her and Nathan decided to go visit him while Lauren and Bonnie slept in the room. They turned on the treadmill and Nathan walked on it for several minutes. I could hear "Poppa" cracking up in the background. Must have been a camera moment.
Since October 1st, there have been over 10,000 hits on this website. It is the busiest website that the "hoster" has. Thanks for all of your support and prayers. God bless you all.
Wednesday, October 6, 2004 08:02 AM MST
This is sort of a quiet week. Not a lot of news since Monday, when we found out that Nathan tested negative for MPS. Praise God. Lauren had an MRI on Monday and both of them have had blood work done to see if Nathan is a match as a donor. Apparently, they may have to take a little of Nathan's bone marrow, as there is not quite enough cord blood stem cells for the procedure and it also helps the engraftment process. So, little Nathan will be more of a hero than we originally realized. PRAY that Nathan is a match...that is our best chance at Lauren having the least chance of Graft vs. Host Disease.
The family did meet with Dr. K on Monday and through the examination and interview, they have decided to put Lauren on the waiting list for a bed. It appears that Lauren's progression is very little and will not be affected by the procedure. So, Lauren could start as early as two weeks. It does appear that some of the testing that it going on right now is for research purposes, rather than to see if she is a candidate.
The family is homesick so Dennis is flying out on Thursday to see everyone. I know that it will boost all of their spirits, especially the kids, to see their poppa. They have been asking for him lately, so of course, poppa couldn't resist.
Monday, October 4, 2004 09:12 PM MST
Praise time! Nathan's test results came back negative. He does not have Sanfilippo Syndrome!
Saturday, October 2, 2004 11:19 PM MST
Today was a busy day around the house as several gals from the church and my mom and her friend helped me pack up the house for our anticipated move next weekend. As of this evening, 80% of the household items are in boxes. The walls are bare, the kitchen cabinets are bare, the bathrooms are bare and it is starting to sink in that this era in our life is about to close. Lauren, we pray, will come home to a new home in just over a year. Thank you to all the ladies and family that helped me pack the house.
The kids, Carrie and Bonnie had a quiet day today and will have a quiet day tomorrow. On Monday, Lauren starts the "real" tests. She is scheduled to meet with Dr. Kurtzberg at 11:00 a.m. and Lauren has an MRI at 12:30. Tuesday and Wednesday are off days - no appointments. On Thursday, Lauren has a BAER and VER. The BAER tests her hearing using the brain response (similar to the ABR that she has had twice already since 2002). The VER tests her vision using brain response (she has never had this before). On Friday, Lauren has an EEG which tests her brainwave function. All of these tests help to determine whether the disease has started to affect these areas of her body. At the end of the week, early Friday afternoon, they will meet with Dr. Prasad to discuss the results and determine if she is eligible for the final week of testing, which includes the exam of the organs for damage.
We will keep you posted. Our most urgent prayer at this point is to get the test results back on Nathan to ease our minds and allow them to test him to see if he is a match for the donor stem cells. This has never been done before at Duke, where a sibling has donated cord blood stem cells to another sibling. So Duke is also pretty excited about the possibility. So, please pray for the test results to come back and be negative. That will lift a huge burden from our minds.
Brian
Friday, October 1, 2004 06:47 AM MST
Well, after a promising week of tests and interviews, the family has the day off today and through the weekend. They will be getting some rest and playing with the kids today. Lauren's great-great uncle and his family are driving up from Georgia this morning to meet the family in Durham. Her great-great uncle was a minister, so he will pray for Lauren today when they get there.
This week she met with therapists to review her current abilities. They videotaped her walking and took notes of her abilities. During one of her doctor's visits this week, he asked Lauren to grab his tie. Lauren didn't do anything. Then Bonnie spoke up and said that nobody in Arizona wears ties. She told the doctor to ask Lauren a question that she would know. So, he asked Lauren where his glasses were and she immediately grabbed them from him. Thought that was a really funny, but sweet, story.
Lauren will have an MRI on Monday and this starts a week of more in depth tests to examine her organs and interior side of the body to determine if the disease has progressed to make her not be a candidate for the procedure. Based on the first week, in our minds and the doctor's, she looks like she will definitely be a candidate. They are also meeting face to face with Dr. Kurtzburg for the first time as well, so we can get some of the additional "hard" questions asked in person.
The house in Gilbert, AZ is being packed today and tomorrow and moved next weekend. Anyone interested in helping, please contact Brian or Lynette. By the way, newschannel 3 has added three of Lauren's newsstories to their website so you can watch them. Go to http://www.azfamily.com/video/ and scroll 1/3 of the way down the page until you get to More Stuff. There will be three videos that you can watch from your computer. They have done a great job covering this story.
A new event being planned right now is a Golf Tournament on December 3, 2004. Thank you to Trilogy at Power Ranch, the members of Trilogy and everyone else participating in planning the Golf Tournament and Benefit Dinner. We hope that this is a big event for Lauren's cause. We need volunteers, sponsors, players and donations for raffles and silent auctions. If you have something to offer or would like to help, e-mail jhutman@intrawest.com or lynettehull@kw.com. If you are interested in playing, go to http://www.golf4goldaz.com to register. Hurry, slots are filling up fast.
Thanks again for all of your prayers, support and generous donations. We definitely feel them each and every day. God bless all.
Brian
p.s. The website is currently going through some extensive changes, adding items that will be useful, as well as informative (i.e. thermometer, paypal, pictures, videos, etc.). Check back in the next couple of days and you'll hopefully see the difference.
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