December 22, 2004 (Sara's Journey begins)

Sara's journey of fighting Leukemia ALL (Acute Lymphocytic Leukemia) began on December 22, 2004. Three days prior to December 22, Sara had what seemed to be a common cold. The whole family had been sick a week before with cold symptoms and everyone got better but Sara's cold lingered on. On the evening of December 21 around 2:00am Sara woke up in a sweat and vomited. She had a fever of 102. We cared for her that evening and thought she must have a nasty bug, flu, etc. Tylenol kept her fever down and she was ok in the morning. Later that day she complained that her legs hurt and she would not walk or stand on her legs. We made an appointment with her doctor for the following day (December 22). At the Dr's office she checked out ok and they could not find anything wrong with her. Our Dr. recommended we go to Children’s Hospital Emergency and have a blood test done (By going to the emergency room and have the blood work done we could get the results in an hour instead of days). We went to the emergency room and they took Sara's blood (Boy was that painful. They stuck her twice before they could find the vein. There is nothing worse then having to hold your own child down and cause him/her pain). We had no idea what bad news awaited us an hour later. When the Dr and several other hospital staff members came into the room together we knew we were in for some bad news. The Dr. said... Your child has Leukemia.

As any parents would be, we were devastated. December 22nd was a very tough day. On one hand your coping with the emotions of your child being deathly ill and on the other hand your trying to learn and figure out what the next steps are to get her well. We were inundated with information. Sara was immediately admitted to Hematology/Oncology Center within Children’s Hospital in San Diego. The next day (December 23rd) they performed a bone marrow test to re-confirm she does in fact have Leukemia, a spinal tap to see if the Leukemia is in her Central Nervous System and genetic testing to help determine best course of treatment for her. More coming…

    February 7, 2005

Today Sara went in for her 1st of 6 three-day hospital stays to undergo additional chemo treatment. She receives a lumbar puncture where they injected Methotrexate in her spine (as a preventative measure to insure the cancer does migrate to her central nervous system). She was put to sleep for the procedure and it only took 15 to 20 minutes. She is then given Methotrexate over a 24-hour period by IV (through her port), then over the next 24 hours Sara is given a saline solution that will flush her system and remove the Methotrexate. She is then given Leucovorin to help revive her good cells and prevent further damage to her body. The idea is to kill the bad cells (and unfortunately good cells too) and then stop the Chemo and help her good cells get back to normal. She got a little nauseated, but did very well. The hospital has a nice toy room and a wonderful staff. All Sara talks about is going to the toy room and seeing Heidi (one of the hospital staff that Sara has grown attached to). It sure makes it easy to take her to the hospital when she likes to go there. So far she thinks it is a fun place to go - we will try and keep it that way.

    February 15, 2005

Sara went in to the outpatient clinic for an injection of Vincristine. Vincristine is a cancer cell medication that they inject directly into her port. As soon as this was done she got to go home. She also started her first 7-day dose of Dexamethasone and Zantac.

    February 22, 2005

Sara went in again to the clinic for her VCR (Vincristine) injection. She did well and is doing fine.

    February 23, 2005

Sara woke up with a fever of 101.5 this morning, so we took her to the hospital to get checked out. Sara was admitted and hopefully will not be in the hospital for more then a day or two. The rule is if a child with Leukemia has a fever of 101 or above, he/she should be taken to the hospital for blood work, monitoring, etc. Any number of things could be going on from relapse, to port infection, etc. When the nurse tried to access her port to draw blood for blood work, the port would not allow any blood to be drawn. The port would flush ok, but the port would not flow the other way allowing blood to be drawn. The nurse put an anti-blood clotting medicine in her port to try and unplug it. An hour later her blood was flowing through her port.

Sara continued to have a fever throughout the day and her blood counts for her ANC (Absolute Neutrophil Count - calculation that has to do with the number of white blood cells and infection fighting cells in the body) were low (238). In a healthy person the range for ANC is 1500 to 5500. In Sara’s situation, with Leukemia, the doctors like to see an ANC greater then 500. They will run a blood culture to check to see if she has an infection of some kind. Until her blood culture test comes back, they will start her on a general antibiotic. They do this just to be safe. If Sara did have an infection, she would be getting a head start in treating it. The hospital will hold her chemo treatment to try to prevent her ANC from lowering further. Sara has had a cold since Saturday, so she may just be fighting a bug. She is doing fine now and we will know more tomorrow when her blood culture comes back.

    February 24

Good news… Sara’s ANC is up to 493. Sara’s blood culture came back negative and her fever is gone. Everything is good and Sara is doing fine.

Sara was released from the hospital this evening and she is back home being her energetic self. She sure is a strong little girl.

    March 1, 2005

Sara went in for her 2nd of six three-day hospital stays to undergo additional chemo treatment. She received the same procedure as the first session; however, we had issued getting blood from her port. The nurse was able to put liquid (Saline) in her port but it would not allow us to draw any blood out of her port. We ended up having to inject TPA (xxxxxx) her port. TPA is a blood-thinning agent. Sometimes the blood can build-up around the port as it sits in the body and can plug up the port preventing blood from being drawn. After letting the TPA sit in the port line for an hour, we were able to draw blood from her port and the remaining three days went fine. Sara did not get n auseous this time and she did very well. Here are some pictures from her hospital stay for her second session.

    March 21, 2005

Sara went in for her 3rd of 6 three-day hospital stays to undergo additional chemo treatment. Again, same procedure as before; however just like the last session we were not able to get blood to draw from her port. Once again she was give TPA, but it did not work. Her port would not draw blood. We ended up having to install an IV in her hand (on top). There is nothing worse then having to hold your child down and cause them pain, but her port was not working and it is necessary for her to continue her treatment. We asked the nurse to try another TPA, she did and we were able to draw blood from her port. Later we were able to remove the IV in her hand and use her port. We were all concerned about the continued port issues and having to use TPA each time to get it to work, so the Dr. scheduled a dye study (were they inject a clear liquid in her port and through a real-time X-RAY are able to see the liquid as it flows through her port. Her port worked fine and the dye study showed nothing wrong with the port. She finished her treatment and she was fine.

    April 11, 2005

Today Sara goes in for here 4th of 6 three-day hospital stays to undergo additional chemo treatment for her Leukemia. Again, same procedure as the last three sessions; however, this time when they went to put saline in her port (to test her port and draw blood) Sara began to cry and we knew something was wrong. We stopped and her neck had bubbled up around her port tube. It was a very alarming event and after about ~4 minutes the saline in her neck went down and Sara was fine. We knew we had major problem with her port, but everyone was very perplexed as to what was going on with her port. Again, we had to put an IV in her. This time we put it in her arm. It was very troubling. The thought that Sara had to undergo surgery to install the port for the purpose of preventing needle pokes and we kept having to hold her to install IV's. She continued treatment with the IV and the next day we met with the general surgeon (who installed her port) to discuss what could be going on. He thought the port could be plugged and may have a sheathe that has built up around the port. This would cause the liquid to run to the end of the line and then run between the outside of the port and sheathe then back out into the neck. We would need to perform a 2nd dye study to see what the port was actually doing (see pictures). We were very concerned about injecting any liquid in her port as the last incident caused her pain. The dye was injected very slowly and we instantly saw the problem. The dye went in the tube and then back out along the outside of the tube and into Sara's neck (see pictures). Unfortunately, surgery was the only option to fix the port. The surgeon discussed options of installing the port on her left side instead of her right side, but unless there was good reason to move the port to her left side, we wanted to keep the port on her right side. We did not want Sara to go through having surgery on both sides and then have to deal with healing on both her right and left side as well as additional scars. After talking to the surgeon, we all agreed we would try to re-install a new port in the same position using her existing scars or if not possible (for any unknown reason that would not be known until she is in surgery) remove the port and allow her heal, then at a later date re-install a new port in her right side as it was before.

    April 13, 2005

Sara went in for surgery around 7pm. The surgeon was able to replace the port and placed the tube a little further down towards her heart. He used the exact same scars as before and Sara did very well through the surgery. We are very happy with the out come. This surgeon (Dr. Bickler) did a nice job. Sara finished her three-day Chemo just fine, but because of the surgery, Sara stayed one extra night and was in the hospital for a total of 4 days this time instead of three. Sara is a strong little girl. She is only 4 months into her 2-½ year treatment and she has already been through so much.

    April 15, 2005

Sara is doing well, the tape from the surgery left a really bad rash on her chest. She appears to have an allergic reaction to the adhesive. She developed mouth sores this time from the Chemo. They are small sores on the in side of her mouth. We brush her teeth several times a day - which seems to help. They do not seem to be bothering her too much. The Chemo kills fast growing cells. The chemo chemicals affect the cells in your body such as hair, lining of your mouth and esophagus, and other cells. Everybody's body has different reactions to the Chemo. In Sara's case, she still has all her hair! We hope it stays that way, but we will see. If not, she has lots of hats that she likes to wear.

    April 18, 2005 (week 17 of treatment)

Today Sara went in for her outpatient chemo treatment. This would be the first time we tested her port after her surgery. Christina (a really sweet nurse that Sara has grown attached to) performed the honors and Sara's port worked great. Sara received a dose of VCR (Vincristine) and will also take her Dexamethasone pills for the next 7 days. Sara was fine with the VCR chemo and her blood work came back with an ANC of 1000 - which is great for Sara's situation. She is doing well and is back to her energetic self. Last week was rough. It's nice to be back on track.

    April 25, 2005

Today Sara went in for another outpatient chemo treatment. She recieved another injection of VCR (Vincristine). She has finished her 7 day cycle of Dexamethasone and she did very well with no side effects.