Saturday, January 23, 2010

Lexi update ~ Preparing for Stem Cell Transplant

Just wanting to keep everyone up to date on Lexi's progress.

Please feel free to hop over to Lexi's Caring Bridge website and follow along their journey or leave words of encouragement and prayer for them.

Just to brief you a bit, Lexi was diagnosed with Stage 4 Neuroblastoma in July 2009 at the age of 7. If you click on the label "L" at the bottom of this blog post you can follow along this journey so far.

Lexi is one of my daycare kiddos that I have been keeping since she was oh, about 2 years old, and we love her just like she's one of us.

This is the latest post from her mom, Jen.

Saturday, January 23, 2010 9:34 PM, EST

On Thursday, we had our first meeting with the BMT team. Dr. Soni will be Alexis's transplant doctor and he did a wonderful job explaining everything to us from the first day of diagnosis to the present day.

First, for the news everyone has been waiting for. Alexis will be admitted on Wednesday 1-27-10 to start the stem cell transplant or as the doctor explained it the long name is actually high dose chemotherapy and stem cell rescue. On 1-28-10, Alexis will start 4 days of high dose chemo and then on 2-4-10, she will have her own stem cells put back into her body.

On Wednesday, Alexis is scheduled to have a Pic line put in place on top of the double lumen broviac catheter she already has. The doctor stated that Alexis will most likely be on TPN, round the clock pain medicines and will require many transfusions. Thus the extra line will be needed. The good news is that the Pic line will be removed before she goes home. On this day the BMT staff will be giving us an orientation to explain the extremely strict rules in order to prevent Alexis from getting infections. Both Scot and I are able to be with Alexis to begin what will most likely be an extremely emotional month.

On Thursday, Alexis will start 4 days of high dose chemotherapy. Dr. Soni explained that these medicines will be 10 times the dosages of her previous chemo medicines. Due to the high dosages, we can expect all of the previous side effects that she has had with much more intensity. She will have extreme nasuea, diarrhea and moth sores. Most likely she will have C-diff again and will require TPN to give her nutrients. One of the side effects of the chemo drugs that she will receive excretes the medicine out of the skin. This excretion can cause rashes and breakdown. To prevent this, Alexis will require special baths every 6 hours from the time the med starts until two days after the chemo drug is completed.

After chemo, Alexis will have 3 days of rest and then she will be given back her stem cells that were previously taken from her body and stored at OSU. It will then take up to 14 days for Alexis's body to make enough stem cells to recover her counts. This means that Alexis's ability to fight infection will be at 0 for 10-12 days. Once the counts come up the side effects will go away.

As long as Alexis does not have any major set backs, she should be able to come home within 4 weeks. Alexis will then have 4 weeks of rest before she starts radiation. After radiation, Alexis will take retinol A and possibly begin another research study that includes using biologic therapy. What we learned from Thursday's meeting was that most kids who begin the transplant have no current cancerous cells. Since Alexis still has cancerous cells in the bones of 6 points of her arms and legs and the tumor and lymph nodes removed were still cancerous the chemo has not been successful enough to kill the cancer altogether. We knew that it was going to be very hard to kill the cancer from the bones. But what this reminds us is that we still have a ways to go before a successful recovery. At this point we are still looking at 9 months of treatment.

Dr. Soni was optimistic that the radiation could wipe out the cancerous cells in the bones. If anyone knows anything about biologic therapy, please pass it on.

Since Alexis has been diagnosed, we have followed many other families stories who have been through similar challenges like our own. I never realized how many children are affected with life threatening illnesses. Our thoughts and prayers go out to all children and their families who face these challenges.

Thank you again to everyone who follows our story and is here to show support to us. I can't express enough how much it means to us. Everytime I read the guestbook I hear from someone I have not had contact with in years. It really shows how many people we have behind us and that just makes us that much stronger!

Alexis has had a wonderful few weeks! She is really enjoying her time feeling great. We have tried to get her out of the house as much as possible and have been able to see many people before the transplant.

Thanks again for being here for us!!




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