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Sunday, November 28, 2004 09:56 AM MST
The day after Thanksgiving, they gave Lauren a dose of nupogen and her WBC count went up to 10. Yesterday, she was down to 5. Her platelet level has not been dropping as fast lately. She used to have to get platelet transfusions every day. She will probably get one today, but it will have been 4 days since her last. So, that is promising.
Otherwise, everything is still going well. Lauren is healthy and mom and dad are getting better at giving medicines and hooking up IV machines at home.
Thanks for all of your support and prayers.
Love,
Brian and Carrie
Thursday, November 25, 2004 04:19 PM MST
We spent most of Turkey Day at the clinic. Lauren had to have a blood transfusion today, which took 3 hours. In addition, the nupogen had to be given again today as Lauren's (Nathan's) cells are not growing enough on their own. They are growing, but at a very slow rate. So, since we took her off the nupogen on Sunday, her WBC and ANC counts have continued to drop. The WBC count was at 2.3 and her ANC count was at 1,100 (compared to 7.3 for WBC and 5,400 for ANC on Monday). This is common, but the doctors didn't think that Lauren was experiencing any problems with cell growth since her levels grew so quick. So, Lauren will continue to have transfusions and nupogen until they see growth on her own without the accelerator medicine.
We would also like to encourage everyone in Tucson and Phoenix, especially, but including everyone that is following our journal, to donate blood or platelets in the next few weeks. There is a shortage of platelets right now and the doctor's are having to argue their case to get their patient's transfused. Lauren receives a platelet transfusion every other day. So there is definitely a need for us as well as all of the other patients at the hospital. Note: platelets are only good for 5 days, so please donate in the weeks ahead as your schedule allows. Also, please spread the news so that people are more aware of the need for blood and especially platelets. You can donate at any Red Cross by calling and scheduling an appointment.
Our prayers for Lauren today are that her new cells would start to grow faster without the need of medicines. Also, pray that her blood pressure would drop as she has continued to run high for the past few days. Pray that her platelets would start to produce on their own so that she does not have to have so many transfusions. Most of all, pray that we stay healthy so that she doesn't contract an illness, virus or bacterial infection, as she is nearly nutropenic again.
As always, thanks for your prayers and support. We miss you all and think of you often. God bless you all on this holiday.
Love,
Brian and Carrie
Thursday, November 25, 2004 08:12 AM MST
Happy Thanksgiving to all of our friends and family that have been with us through this whole process. We could not have made it this far, this successful, without your prayers and support. Our family has so much to be thankful for.
"Gracious Lord Jesus,
Thank you Lord for the people who were committed to praying for us and Lauren daily. Thank you Lord for the doctors and nurses who treated Lauren during this procedure for the wisdom, patience and strength that they endured and have obtained. Thank you Lord for the medicines that helped Lauren successfully discard the old cells and start growing new cells. Thank you Lord for little Nathan and his courageous donation of both cord blood and bone marrow cells for his big sister (we love and miss you, little buddy). Thank you that Nathan's recovery was quick and mostly painless. Thank you Lord for taking such good care of Lauren during this procedure and helping her be a "textbook" case with no complications, illnesses or sicknesses.
We have more to be thankful on this Thanksgiving Day than any other year. Thank you Lord for your love and son Jesus who gracefully gave His life so that we could have new life in Him. In Jesus Name, Amen."
We pray for those of you following our journal that don't know Christ. We pray that you would seek Him out in your life. We wouldn't have made it through these days as peacefully as we did if we hadn't know Him. That is our prayer for you today as you have continued to pray for and support our family and Lauren over these last few months.
We hope you all have a wonderful Thanksgiving Day, celebrating Lauren's successful procedure as well as thanking Him for your own blessings this past year. Today will be a quiet day. Brian's mom was supposed to come down this past weekend, but she got a cold. So, Carrie, Brian and Lauren will celebrate Thanksgiving together in our apartment. Brian's Mom, Heather, Grandma and Aunt Wanda will come by and view Lauren through the window, just so they can see her. They also said that they were bringing plates of "food."
God bless you all.
Love,
Brian and Carrie
Tuesday, November 23, 2004 04:40 PM MST
LAUREN IS "HOME." She was discharged from the hospital yesterday afternoon and we spent the night in the apartment. We had a home health care nurse visit us last night to help us with medicines and IV's. Lauren slept through the night, although it took both mommy and daddy laying down with her in a queen size bed to get her to go to sleep. We awoke this morning, got ready, gave her medicines and headed to the hospital for her first day of outpatient clinic. The we drove around town for a little while before settling back at the apartment for her nap. She is now sleeping while daddy writes the newest journal entry.
Her counts went to 7.4 for WBC and 5200 for ANC yesterday. They took her off the nuprogen, which is a cell growth accelerator drug yesterday and her counts went to 4.2 and 1890, which is usual. It seemed to be a considerable drop, but the doctor said that it is normal and expected. She is doing very well still. I think she likes being home and not attached to so many tubes and machines. She only has one machine that runs constantly for her cylcosporine and she gets her nutritional supplement via IV (called TPN) at night. Her machine is a mini device that fits into a fanny pack.
Please pray that her cells take off growing without the need of the nuprogen again. Also, pray that she does not pick up any viruses or bacterias while going back and forth from the hospital. Thank you for your continued prayers. God bless.
Love,
Brian and Carrie
Friday, November 19, 2004 12:25 PM MST
Short entry today. Lauren's WBC count is at 1.9 and her ANC is at 1,216, so she is no longer nutropenic. Praise God.
Thursday, November 18, 2004 11:30 PM MST
Lauren's counts were 1.2 for white blood cell count and 492 for ANC. She keeps going up and everything is going very well. We met with the discharge coordinator today to start to talk about "homecare" and clinic. There is a lot of information and duties when we get home, but Carrie and I are ready...and the hospital is readily available when we have questions, concerns or problems. It still looks good that Lauren will be released Monday afternoon.
It did not register with me how blessed we were to have Nathan's cord blood and have him be a 6 for 6 match. Not only did it increase her chances for survival, but it also cut the critical time from 100 days to about 50 days, so we could be back in Phoenix by mid January. Normally patients don't leave the hospital until at least day 21, but since Lauren is growing cells so early, they are comfortable releasing her at day 17.
We also had another answered prayer today. We asked Dr. Graham which hospital in the Phoenix area he felt comfortable with us going to in case immediate medical assistance is required and we can not get to Tucson. There is a doctor at Desert Samaritan in Mesa that used to be a transplant specialist in Michigan. He is now the pediatric hemotologist/oncologist at Desert Samaritan and Dr. Graham is recommending him as our follow up physician when we cut down on our weekly visits to Tucson. That means that we can live in the east valley near family and friendst. We are very excited about this.
May God bless you all for your prayers and continued support.
Wednesday, November 17, 2004 05:37 PM MST
Everyday, the news gets better. Her white blood cell count is at .7 (700) and her ANC is at 301 (301,000). In fact, the doctor stated today that if there are no complications the rest of the week and we are comfortable with her central line care, she will be released on Monday afternoon. She will also have to take medicines orally instead of intraveneously. Carrie will try to give the first doses tonight and see how she tolerates it. Tomorrow, we will start calorie counting to see how long we have to stay on the TPN (supplemental feeding system via IV) for.
So, daddy has been requested to buy candy bars and Krispy Kremes to get her started eating. Please pray that her appetite increases so that everything is easier on her. Also, pray that she tolerates the oral medicines.
We're so excited to share the good news with you and know that your continued prayers are being answered. Thank you from the bottom of our hearts and God bless you all.
Brian and Carrie
Tuesday, November 16, 2004 10:06 AM MST
Lauren's white blood cell count is at 0.3 (300) this morning and her ANC, which has been zero for 7 days was at 45 (45,000) today. Praise God, for he is faithful and just. Her cells are growing like they are supposed to, but they have started early. It's so exciting to share the good news with all of you. I realized just how many people are reading the journal everyday when I talk to people, so I will try to update daily for a while so you all know exactly what is happening.
Good news. As promised, we finally have pictures on the website. Go to the home page and click on photo journal at the top of the page. Caution - there are a lot of pictures and if you don't have high speed internet service, it may take a while. We are working on breaking up the pictures into multiple pages so the pages can load faster. But it may take a few days. Pictures of Lauren's birthday are included on this page. I hope that you enjoy. You can finally see what Lauren looks like right now without her hair...I think she is cuter than a button.
Love to all,
Brian
Monday, November 15, 2004 03:48 PM MST
Great news. Lauren has had cell growth. Her white blood cells went from 100 to 200 over night (normal is between 5,000 and 10,000). Keep in mind that a week ago she was at 0. Dr. Graham saw cell growth under the microscope, but the lab also detected it from her blood tests. Usually it takes the lab until day 14 to see cell growth. So, Lauren's cells are growing, growing, growing as we have been praying.
Today is Lauren's birthday and many people have been bringing her gifts and telling her Happy Birthday. She received a cake from the kitchen staff for lunch today. She played with the icing a little, but did not eat any of it. She still doesn't have an appetite, so it was no surprise that she didn't eat any of it.
May God bless you all.
Sunday, November 14, 2004 06:14 PM MST
It seems that the days run together now. We don't even know what day of the week it is. Lauren is doing so well. In fact, the doctor told us this morning that if Lauren continues to do as well as she currently is, that we may be able to go home in 7-10 days. That puts us home (apartment in Tucson) around Thanksgiving. What a wonderful gift that would be. In addition, he also told us that we could be able to go back to Phoenix within 4-6 weeks if all continues to go well. She still will be in isolation for a year, but it is just as easy to isolate up there as it is here in the apartment.
Lauren is having difficulty with the heparin. The doctor thinks her nosebleeds are being caused by the heparin dosages used to prevent venous occlusive disease, so he has started her on a holistic (natural) oral medicine. Please pray that this works. He may give her a small dose of heparin tomorrow and see if she has a nosebleed. Dr. Graham also told us that he should be able to start seeing cells growing under a microscope the early part of this week. Please keep this in your prayers as well.
She has almost lost her hair. It came out really fast on Friday, but yesterday and today it has slowed down. She is still cuter than a button. She has to wear a hat for her walks on the floor, so with the gown, mask and hat, she looks like a little eskimo.
Tomorrow is Lauren's birthday. She turns the "big 4" tomorrow. It should be a special day for all of us.
We ran into someone in the ward today that lives in Phoenix and was visiting one of the pediatric patients. He recognized Lauren from the television and radio station stories. He said, "your famous in Phoenix, Lauren." He heard all about Lauren on Power 92 this past week and a half.
Thank you for your continued prayers and support.
Love,
Brian and Carrie
Thursday, November 11, 2004 09:43 PM MST
Today was not as great a day. Lauren started having a nosebleed at 7:30 a.m. and it took nearly 2- 1/2 hours to stop it. Nurse Robert was a really patient man this morning, as he sat there and put pressure on her nose the whole time trying to create a clot. Finally, at about 10:00 a.m., it stopped. However, she then vomited shortly after, spitting up all the blood that she had swallowed during that time. At about noon, she sneezed, dislodging the clot that had formed and her nose started to bleed again. This time it took about 45 minutes before it stopped. After getting her cleaned up, she vomited again. But we believe that all the vomiting was induced by the large amount of blood that she swallowed, not from an infection or virus. She is doing much better tonight.
She had a platelet and blood transfusion today at separate times. She ended the day walking the halls and in good spirits, so we think she should rest well tonight and may be past the nosebleeds. She is also starting to lose her hair today. I would guess that by the weekend, it will be gone. Sad to see it go, but at least we expected it all along to be earlier.
Good night.
Tuesday, November 9, 2004 08:39 PM MST
Well, it has been a few days since I last wrote. That is because Lauren's condition has not changed and there really isn't anything new to report. Lauren continues to have lots of energy and is doing very well. In fact today, she wanted nothing to do with the bed. She was very ambitious and energetic than any other day. We had a hard time keeping up with her. We were thrilled to see her have so much energy. God is really working a miracle.
Many people have asked how they can send a card/gift to Lauren. Our address in Tucson is 2299 N. Silverbell, Apt. 4118, Tucson, Arizona, 85745.
If I don't update the journal for a few days, it just means that Lauren is still doing well and there is really nothing to report. Thanks for your continued prayers. They are working.
God bless you all.
Brian
Friday, November 5, 2004 03:44 PM MST
Today was a BIG day. Lauren had her transplants. The transplant is anti-climactic. It is given by the nurse in her room through her central line. No operation or anesthesia required. Nathan was a real trooper this morning. He fell asleep prior to his admittance to the anesthetist, so he doesn't even remember being taken from Mia and Poppa, back to operating room and Mia and Brian were there when he woke up. He is at the hotel now, doing well and getting spoiled (he deserves it).
The doctor mentioned to us this morning that Nathan's cord blood specimen was full of cells. He said that it was the best speciment that he had ever seen. They couldn't do the test on the cord blood until it was thawed, which occurred this morning. God knew what he was doing when he guided us to save the cord blood. Carrie and Nathan had a great sample. AMEN.
Lauren has had a great day and continues to amaze us how spirited she is. Our prayer today and for the next few days is simply...GROW CELLS GROW. Also, pray that Lauren's body does not reject the new cells. Thanks for your continued prayers.
Update on JonJon and Baby Mendoza...they are both doing much better. They and their families appreciate your prayers as well.
Brian and carrie
Thursday, November 4, 2004 08:28 PM MST
Tomorrow is TRANSPLANT day. Lauren will receive the cord blood transplant at about 8:00 in the morning. Nathan's bone marrow harvest will occur at 10:00 a.m. and Lauren will receive it between 1:00 p.m. and 2:00 p.m. Nathan's bone marrow is only being given to help the engraftment of the stem cells.
Today was a "day of rest" although it seemed that she received more medicine today than any other day. The day of rest refers to a day without chemo. It is the first day since she started that she did not get a dose of chemo. Her counts have dropped below 1,000 and she is expected to be at 0 within the next 2-4 days. She continues to be in a great mood, although today she was very mellow. I believe that the medicines (tylenol, benadryl, etc.) kind of made her drowsy. But she is still in good spirits.
Our prayers tonight and tomorrow are for a successful cord blood transplant, safe bone marrow harvest and procedure from Nathan and rapid engraftment of the cells.
God bless and good night.
Brian
Tuesday, November 2, 2004 09:03 PM MST
Lauren continues to amaze us and the doctors. She is nearing the completion of her chemotherapy and she is still full of energy and hasn't "skipped a beat." Nonna came to visit yesterday and Mia and Poppa brought Nathan down today. Carrie and I spent the day with Nathan at the apartment while Mia and Poppa spent the day with Lauren. Everybody had a great day. It was nice for Carrie and I to spend some time with Nathan as our time with him over the next few weeks will be very limited. We probably won't be able to see him for at least 2 to 3 weeks, while Lauren is neutropaenic (sp?) meaning that she has zero counts and is most succeptible to sickness and virus'.
We would like you to also pray for a couple of other pediatric transplant children in our ward that are currently experiencing some "rough" times. They are JonJon and Baby Mendoza. Please pray for them and their families as they are struggling right now.
We'll keep you posted of new events as they unfold.
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