Moving Forward

Maddy did very well today.  She had her catheter removed and a picc line put in her arm.  She continued to get antibiotics today and she will start chemo tomorrow.  The hope is that she can come home by Friday or Saturday-  depends on how she handles the chemo (this is the one her body really doesn't like).      The picc line can stay in 5-6 weeks.  The doctors will plan around her treatments to remove her picc line and replace the catheter.  Maddy says it feels weird not to have the cords hanging from her chest-  they had become such a part of her.

 

On another note, as you may have heard through recent national news stories, there is currently a significant shortage of the chemotherapy medication preservative-free methotrexate in the United States. This drug is critical to the treatment of children with Acute Lymphoblastic Leukemia (ALL). Unless production of preservative-free methotrexate increases, hospitals will run out of the medication completely in the days and weeks ahead.  (This is the next chemo Maddy is due to receive in a couple of weeks!)

YOU CAN HELP IN TWO WAYS

Contact the following pharmaceutical companies who produce methotrexate and ask them to:

Prioritize the production of the preservative-free form of methotrexate. 

Consider working with the FDA to import preservative-free methotrexate if sources are available. 

APP Customer Service

1-888-386-1300

Hospira, Inc. Customer Service

1-877-946-7747

Mylan Institutional

1-888-258-4199

Sandoz Customer Service

1-609-627-8500

Second, contact your Representatives and Senators on Capitol Hill and ask them to immediately send a letter to these same pharmaceutical companies requesting that they:

Prioritize the production of the preservative-free form of methotrexate. 

Consider working with the FDA to import preservative-free methotrexate if sources are available. 

To send a letter to your representatives, go to the following web-site and click on "Action Items":
http://www.kintera.org/c.8hKOI3MFIjI2E/b.6440521/k.82B3/Action_Items/siteapps/advocacy/ActionItem.aspx?c=8hKOI3MFIjI2E&b=6440521&aid=517204

Decision

All of the brains got together today- the oncologists, the surgeons, and the infectious disease doctor- and they have decided that it is time to remove Maddy's central line. Waiting to see if the infection clears just puts Maddy further behind on her chemo treatments. We would rather have a new line than give those leukemia cells any chance of sneaking back in. She is scheduled for surgery tomorrow to remove her central line and put in a temporary picc line in her arm. They will then treat a day or two more with antibiotics and then do chemo. Then the doctors will decide the best time to have a more permanent line put back in.

Delays Continue

Well, here we are Sunday evening and Maddy is still in the hospital. We thought she was going to get out on Saturday, but then her cultures started to come back positive for two different types of staph infections. While these are fairly mild forms of staph and they are not making Maddy physically ill right now, the bacteria seems to have colonized in her catheter lines. Their hope was that the antibioctics would clear it up, but the more days of positive cultures, the chances are getting more slim. Today, they tried a procedure using an alcohol based substance in her lines in hopes that this would cut through the film that has formed in her lines. Unfortunately, we won't know if this has worked for 48-72 hours (the time it takes to watch for growth in the cultures). To complicate all of this is the fact that Maddy is due for a chemo treatment, so each day that passes, puts her that much farther behind. In the end, if the alcohol and the antibiotics don't clear out the bacteria, she will have to have her catheter removed. The doctors will then have to decide whether or not to replace the catheter right away or put in a temporary line until the bacteria is completely gone so she can get her chemo. (This particular bacteria likes to cling to catheters, so they don't want to put a new catheter in until they are sure the bacteria is gone.) We are hoping we will get a few more answers tomorrow as to what the oncologist are thinking. Maddy is also scheduled for an ecocardiogram to check her heart where the central line is located to make sure there are no infected clots. This may also help to determine what needs to be done. As you can imagine, Maddy is going stir crazy. She is leaving notes for the nurses and doctors- "I want OUT now!" and "I still want out!"...

Fortunately, she had some visitors over the weekend. Her aunt and cousins visited since they were home for grandma's funeral. Maddy also had a GREAT time with Miss Heckel and Mrs. Buehrer who "babysat" while Russ and I were at the visitation. Tomorrow, she gets to spend time with our neighbor Lilli while we are at the funeral. A BIG thanks to everyone for helping us out! Words can not express how grateful we are!

Another Delay

Maddy was supposed to start the second chemo cycle of four on Tuesday after having many delays. Her counts finally made it, but she had been having some episodes the last two weeks where she would get chills, run a low grade fever, have a headache, and eventually would vomit. When we got to the hospital on Tuesday to start chemo, we went over what had been happening again with the doctors. To make a long story short, the symptoms she was having were due to an infection in her central lines. Everytime her lines were flushed after blood draws, the bacteria was pushed into her system. Luckily, the bacteria she has is very treatable with antibiotics, so that is what they are doing now. Hopefully, her cultures will start coming back negative and we will be able to come home in a day or two and finish up the antibiotics at home. Then she will have to go back to the hospital to start the next cycle of treatment when the infection is taken care of.


To add to all of this, my (Dorothy's) grandmother passed away this morning. She passed peacefully in her sleep. Something we are all grateful for.


Thanks again to everyone for all of your thoughts and prayers!

Thank You!

A huge thank you goes out to everyone who helped make the ABC 4 Maddy Relay for Life supper a HUGE success! Another reminder of how blessed we are.

The only thing that would have made it better would have been if Maddy would have been able to be there to help out. She was so determined to be there. On Wednesday evening, we took her to the hospital because she was having a lot of back pain. They got that under control ( we think she was having muscle spasms) and then she started having a severe headache and got nauseous every time she sat up. She was also battling mouth sores that had been making it difficult for her to eat and drink. By Friday morning, after a lot of pain medication, she felt good enough to "trick" the doctor into discharging her. We got home in time for Maddy to take a little nap and then get ready to go to the supper- thanks to everyone who scrambled to get a recliner for Maddy to sit in. The ride to the school made her nauseous again, but Maddy tried to stick it out. She was so sad when she had to leave after a very short time.

Fortunately, Maddy felt better on Saturday and is feeling even better today- we are trying to keep ahead of the headaches and take medicine before they get really bad. She is due to start the second cycle of treatment in this phase on Monday if her counts are where they need to be and if her mouth sores are under control. She will go to the clinic on Monday to be evaluated. We really don't want her to start unless she is truly recovered. The first chemo in this cycle is the one that Maddy's body really does not handle well- she needs all of her strength to be able to handle it.

Relay for Life Event

There will be an ABC 4 Maddy Relay for Life Supper before the Archbold
versus Wauseon boys basketball game on Friday, January 27.  The menu
includes baked potatoes with toppings, desserts and walking tacos
available for kids.  It will be in the high school cafeteria from 5:00
to 6:45.  Free will donations will be accepted.  All proceeds will go to
RELAY FOR LIFE---ABC 4 Maddy Team.  Come help crush cancer!

Finally!

Maddy went to the clinic today for bloodwork and her white blood count finally got high enough to start the next chemo treatment.  We were getting a little worried and the doctor had scheduled a bone marrow aspirate for today if she didn't make counts.  We were relieved and never so happy to hear that Maddy could get chemo!  Of course she was delayed for three weeks, so what was supposed to be the first of a six week cycle, has now turned into a nine week cycle.  We have all decided that Maddy just did not want to be in the hospital for Christmas or for New Years or for the weekend...  mind over matter!

Thanks to everyone for continued thoughts and prayers!