Monday, May 30, 2011

Autumn had a great weekend! I hope you all have as well!

We are off to SB tomorrow for a blood check up. She will most likely end up with a transfusion, as this is what occured last time. The tell tale sign are these small little dark brown dots that occur in groups of 4-10 or so on one's skin. I noticed one such group on her little nose this morning.

Here is a little guide that I located on the internet:

Guide to Blood Counts

Carolyn Vachani, RN, MSN, AOCN
Abramson Cancer Center of the University of Pennsylvania
Last Modified: March 11, 2011

Cancer therapy not only destroys cancerous cells, but may affect healthy cells in your body. Blood cells are commonly affected during cancer therapy, and this can lead to problems depending on the function of that blood cell.

Use the blood count chart to follow your blood counts after treatment. This will help you know when extra precautions are necessary.

White blood cells (WBC): These cells are produced in the bone marrow and are a part of the body's immune system, helping to fight infection. A normal WBC count is 4,000-11,000 in adults.

Neutrophil: A type of WBC. It is the most important WBC in fighting infection, so you are at higher risk of infection when this number is below 1000. A normal count (sometimes called an ANC) is 2500-7000. A count below 1000 is called neutropenia. When this count is low wash your hands frequently, avoid large crowds of people or those who are sick, and check your temperature at least twice a day. Notify your healthcare team if you have a temperature greater than 100.4, a sore throat or cold, or a sore/wound that does not heal.

Hemoglobin: The part of a red blood cell that is responsible for carrying oxygen to the tissues. Normal levels for an adult female are 12-16 and 14-18 for an adult male. A low hemoglobin can make you feel tired. If you notice any difficulty breathing or pain in your chest, you should notify your healthcare team. If your count becomes too low or you experience breathing difficulties or chest pressure, you may receive a blood transfusion.

Platelet: A blood cell that is involved in blood clotting. When this count is below 50,000, you are at higher risk of bleeding. The risk of bleeding increases as the count becomes lower. A normal count is 150,000-300,000 in an adult. When your platelet count is low you should not use a razor (electric razor is ok), do not participate in any contact sports, or take aspirin or ibuprofen products (these can also increase the risk of bleeding). Let your doctor or nurse know if you have any bleeding, including nose bleeds or bleeding gums. If your count becomes too low or you have bleeding, you may receive a platelet transfusion.

Thursday, May 26, 2011

Although we are at the tail end of the first of three rounds of chemo treatment, we are still faced with the reality of 3+ blood transfusions in the coming weeks. The good news stems from the benefit of these transfusions, especially with hemoglobin. Autumn with have an almost sudden burst of energy when she undergoes a transfusion that is almost comical to witness! In the middle of her treatment she will hop up on the hospital bed and dance around, shaking her booty and making the silliest faces and noises! Perhaps instead of depression medication, all we need is a simple blood transfusion and the world will be a happier place!

Autumn usually has her blood drawn once a week to make sure that her numbers are at a place that she can continue her chemo along the scheduled path. We often have an hour or so to wait until we hear the results at which point we can make plans for the remainder of the day. Yesterday we spent that time waiting at the zoo! After all, I cannot imagine what Autumn will think of Santa Barbara when she is older…a place people go who are sick, ha! Hardly a vision that city brings to most people. How circumstances can alter perspective.

Autumn is doing really well today after the transfusion. She awoke last night complaining of ankle pain that certainly scared me! She had a children’s Tylenol and fell back asleep with no further incident. There can be so many issues with blood transfusions (isn’t it amazing that it can work at all??). A person that donates could have consumed something that the recipient didn’t even realize he or she was allergic to so that’s what kept me up all night…thinking of what this wonderful donor could have eaten a month ago that could suddenly affect my four year old, strange indeed!

Autumn hasn’t had much of an appetite, especially after last week, that’s always a drag, but the good news is, it does seem to come back! She has been loving Jamba Juice; it’s the one thing she will always drink!

Thursday, May 19, 2011

Autumn is a trooper!! I just cannot believe how well she does given all that she is going through! Next week she will most likely have those crazy transfusions because her blood counts will be low, but so far so good this week.

We have been in SB a lot this week, however we have been coming home a lot as well. We tried a different way to deliever her IV fluids so she could be home, but we didn't have much luck with the home health nurse, so we are going to be in SB for her long treatments in the coming months. There are so few of those that it seems worth the stay (is there a worse place than Santa Barbara to spend a week??)
Headed to SB for another day of chemo. Autumn slept like a log last night! The backpack seemed to work fairly well...she peed about 5 times at night! :)

Wednesday, May 18, 2011

Hello All,

We have been in Santa Barbara this week. So far, so good! Autumn has had the pleasure of having her good friend Kiki with her the whole time, what a fabulous treat that has been! Her mom, Lisa came with us on Monday and her dad Tim joined us yesterday and today.

Autumn had a CT scan on Monday...great results! We are so very thankful!! She is continuing with her scheduled chemo this week...four long days of being attached to something, either a roller at the hospital or a heavy backpack at home. She has adapted exceptionally well given all that she has endured. She is such a sweetheart!

Monday, May 16, 2011

Autumn is a trooper! Finally her blood count is up high enough that she is able to undergo another round of intense chemo this week. We will be in Santa Barbara from Monday-Friday this time. We can make it home one or two nights as well, so that will be good for everyone!

Autumn's friend Kiki came along with us today. What a treat that was for Autumn who was able to be the brave one as she endured a shot in her port and a CT scan (which we have yet to hear the results).

After this week we are expecting a few more transfusions again, both hemoglobin and platelets. The good news is that we are aware of what needs to be done as one of the hardest parts is feeling like you are in the dark about the whole process. Each day is enlightening, to say the least!

Love, Autumn and Family

Wednesday, May 11, 2011

I suppose it is a good thing to NOT know how life will unfold; it may make the final chapters appear less than exciting!
Autumn had yet another transfusion yesterday, a long 7 hour day in Santa Barbara not to mention the three hour commute there and back. We were meant to have blood drawn to see if she was "strong" enough to take another four-day intensive dose of chemo this coming week. As her energy level would have predicted, the results showed a lowered hemoglobin count which meant another transfusion, poor sweet baby! So far, she has had 2 hemoglobin and 2 platelet transfusions which likely means that she will have to do the same after next week. Finally she will get a limited break of 6 weeks where she will have to go in for a short day of chemo each week, certainly a lot less rigorous that what she has already seen.
I hope you are all doing well, we think of all of you often and how fabulous it has been to have you all in our lives. Surviving this could NEVER be possible without you all!

Love, Autumn and her family

Saturday, May 7, 2011

Sweet little Autumn has been doing so well lately. Minus the occasional whininess and lack of hair, more than usual, she seems to take this whole process in stride.

Yesterday, Autumn again found herself in Santa Barbara to have another blood count, something that will most likely occur each week. Her platelet count was low, just as it was on Tuesday. For that reason, she had to stay (with grandpa) to get another platelet transfusion. The whole process is shorter than a hemoglobin transfusion which makes the process that much easier and more acceptable for her. :)

The four day chemo regiment she had two weeks ago had really taken its toll on her cells. I suppose it is a good thing to know it is working, but such a tough idea to think of all of her good cells dying with the evil cancer cells. Someday, it will be fabulous to create a drug that knows to take out just those cancer cells, leaving all else in tact. The problem is that our bodies contain so many rapidly dividing cells such as blood cells, hair cells and taste buds. ALL of these cells are being destroyed along with the cancer cells when one undergoes chemotherapy. It may even affect short term memory. Once in awhile, Autumn will be in the middle of retelling a story and cannot find the words to complete her thought. It may be that she is just tired from all of the medication, but it's tough to say!

I hope everyone has a wonderful weekend! Thank you again for all of your loving support and kindness towards our family through this crazy time of our lives.

Love, Autumn and family

Wednesday, May 4, 2011

Autumn had to have her blood drawn yesterday to be sure that her counts (white blood cells, hemoglobin and platelets) are high enough for good health. Last week her hemoglobin was quite low and she needed a blood transfusion. Yesterday, her platelet count was very low and we had to give her a platelet transfusion poor baby! Everything seemed ok until she barfed a few hours later! With the help of a little Zophran (anti-nausea medication) and Zantec, she was much better by bed time. Today we are taking it slowly and just hanging out...