Thursday, February 24, 2011

Bald Is Back!

Maddy had her weekly treatment today. We were at the hospital for 7 hours. All went well though except Maddy's hair started falling out in clumps today, so on the way home, we stopped and got another hair cut. We went short last weekend, but it was not short enough to prevent hair from getting everywhere. Thanks to the ladies at Salon Bliss for helping us out through this transition. As you can see in the pictures, it is amazing how things can change in a few short weeks.


We also found out today that Julia is not a transplant match for Maddy. This means we will have some major decisions to make over the next couple of months. For certain types of relapses, there is a lot of data on what treatment option (transplant vs. chemo) has the best overall outcome. However, for Maddy's type of relapse, (Isolated Central Nervous System within the first 15 months), there is no clear cut answers when there is not a sibling ("related") match. We have an appointment in March at the University of Michigan to talk to the transplant doctors and review all of our options since we would be looking at finding an "unrelated" donor if we go the transplant route. I am sure we will then do a lot of talking with Maddy's doctors and try to figure out what our next step will be once we get through these first three months.


Wednesday, February 16, 2011

Relay For Life

Russ and I had decided that we wanted to start a school Relay for Life team this year. We had just sent out an email to see who was interested in joining us when Maddy relapsed. Luckily for us, we are surrounded by caring and supportive co-workers. Mrs. Deb Buehrer, Miss Cindy Heckel, and Miss Jen Hurst all stepped up and said they would lead the team. The team members also continued to grow. The team has some exciting fundraising ideas and are getting everything in place including registering the team. In honor of Maddy, the team is called "ABC 4 Maddy" (Archbold Bluestreaks Care for Maddy). You can go to the following web site to look up our team, see our members, check our progress, or make a donation to our team:

http://main.acsevents.org/site/TR?fr_id=31518&pg=entry

Monday, February 14, 2011

We're Home!



It was a very long day, but we finally got home around 7:30 PM. Maddy's surgery to remove her old port and replace it with a Broviac catheter went well. Maddy is quite sore, but hopefully will bounce back quickly before her next chemo treatment on Thursday. With this new catheter, Maddy will not have to get anymore needle pokes, but it is a lot more maintenance since it is partially external. Russ and I will get our lesson on how to do dressing changes and take care of the catheter to prevent infection when we go back to the hospital on Thursday.

It has been a long week and it is only Monday! We are glad to be home and hope to get a good night's sleep without the beeping of IV machines...


Thanks to everyone for continuous prayers!

Sunday, February 13, 2011

Sunday Update

Maddy's fever broke and her cultures have come back negative. She is feeling better except for being tired and a little cranky- the steroids are kicking in! She is just going to stay at the hospital tonight since her surgery to put in her new port is Monday- just in time because her counts are already dropping from her chemo treatment last Thursday. If all goes well, she should be able to come home Monday after surgery. It will be nice for all of us to be home and to be able to sleep in our own beds!

Friday, February 11, 2011

Feisty Girl

Maddy has had a rough couple of days. It started yesterday with having her first treatment of the new induction cycle. We no more than got home when Maddy spiked a fever of 102-103 and had to go back to the hospital last night. When she arrived at the hospital, the nurses tried to access her port. Three nurses later and a half hour of "torture" for Maddy AND Russ, they were not successful. From talking to Russ, it sounds like our usually quiet and shy little girl told the nurses exactly what she thought about the whole process! Neither Maddy or Russ got any sleep during the night. Then this morning Marcy, one of the nurses from the clinic, came over to the hospital to try her luck at accessing Maddy's port. This was another "torture" session with Maddy's feisty side coming out, but eventually was successful. Julia and I arrived at the hospital after school to find a VERY exhausted little girl and her very exhausted dad. At this moment, Maddy is finally sleeping peacefully- except for when the alarms go off on her IV machine...

She is now scheduled to have surgery to put in a new type of port on Monday. We are hopeful this will eliminate some stress for her! For now, she is just hanging out at the hospital so they can monitor her temperature.

Thursday, February 10, 2011

P.S.

Maddy spiked a fever around 9:00 PM. Russ is headed back to the hospital with Maddy right now so they can keep an eye on her for the next couple of days.

Day One - Take 2

Looking back, our journey first began on Thursday, November 12, 2009 when Maddy was first diagnosed with ALL. This Thursday, February 10, 2011, our journey seemed to start all over again. Maddy had her first treatment since her relapse was discovered. She did well even though she was given three different drugs in her spinal fluid, two chemo drugs through her port, and started a 28 day cycle of steroids. Unfortunately, she also has to go back to the clinic tomorrow for two shots in her legs. We got the "BIG" pill case out again to keep track of all her medicine (most of which are to lesson the side effects of the chemo drugs.) She is not feeling the best tonight, but as usual, she remains strong!

Yesterday, Maddy was able to go to school to see her classmates and have a little party. When Maddy walked into the school, she saw the wonderful chain that all the elementary students created for her. She then ate lunch with her class. I never knew second graders could eat so much- pizza, cheese puffs, carrots, finger jello, cookies, root beer floats! She was also able to play games with her friends and have some fun with them at school one last time. Miss Hurst and her classmates also presented Maddy with a beautiful quilt. The quilt was in her favorite lime green color and had pictures of Maddy and her classmates throughout the year ironed onto it. They said that Maddy should wrap the quilt around her whenever she felt lonely so they could always be there for her. Maddy loved the quilt and took it to the hospital today!

The Lamberts have again been humbled by all the love and support we have been shown in the last few days! One example- the uncle of one of Maddy's classmates heard that Maddy had cancer. He stopped by to see me and give me "A Pocketful of Promises -- What Cancer Cannot Do (a set of 60 promises, scriptures, and inspirational thoughts). He said that he had bought them for his wife who had cancer but she passed before she could use them. He wanted us to have them. I thought I would share:

What Cancer Cannot Do
Cancer is so limited... It cannot cripple Love. It cannot shatter Hope. It cannot corrode Faith. It cannot destroy Peace. It cannot kill Friendship. It cannot suppress Memories. It cannot silence Courage. It cannot invade the Soul. It cannot steal Eternal Life. It cannot conquer the Spirit!

Monday, February 7, 2011

The Plan

After two hours and forty-two pages later, we walked out of the clinic tonight with "the plan" for Maddy's treatment. There are parts of the plan that we do not even want to think about at this time. The doctors go after the cancer cells with a vengeance when there is a relapse since these cells obviously are resistant to the standard treatment. Unfortunately, this means that there are a lot more side effects and risks associated with the treatment. Russ and I are trying not to think too far ahead and just need to take each day as it comes. Thinking ahead hurts too much! Maddy had to come tonight so the doctor could explain to her what was going to take place (this is a requirement of their protocol). As usual, Maddy was very quiet and did not ask any questions. She seems to just take it all in and we aren't exactly sure what she is thinking, but she continues to be strong and brave.

Maddy will start the first of a three month induction cycle on Thursday. The first month will consist of weekly chemotheray through her port and into her spinal fluid along with a few other drugs including steroids. The second and third months are even more intense and will have us spending more time in the hospital.

Julia will also have blood work done on Thursday to see if she is a match for a bone marrow transplant. We found out today that there is about a 25% chance that Julia will be a match. If she isn't, it looks like a transplant will most likely not be an option and intense chemotherapy over two years will be the plan.

We are thankful again for everyone's thoughts and prayers! While we thought we were nearing the end of this journey, it appears that we now have yet another mountain to climb. We could not do this without the continued support from all of you.

Friday, February 4, 2011

Call from the Doctor

We just received a call from Maddy's doctor. Her bone marrow was clear!!! Russ and I will be going to the clinic on Monday to go over Maddy's treatment plan and sign paperwork. Maddy will now start treatment on Thursday- they figured out that they have to wait seven days from her last treatment.

Relapse

Yesterday, February 3, 2011, Maddy went for her monthly chemo treatment and a spinal tap. Upon testing, the doctors found leukemia cells in Maddy's spinal fluid. We went back to the hospital today for further tests of her bone marrow. They are thinking right now that Maddy has an “Isolated Relapse of the Central Nervous System”- leukemia cells in her spinal fluid. The first look at Maddy’s bone marrow was good, but they are still running further tests to see if there are cancer cells in her marrow. Either way, we are looking at three, one month chemotherapy blocks. The first being similar to what she has done in the past, the last two being extremely intense. From there, we have decisions to make whether to continue chemo and radiation or do a bone marrow transplant. This decision is influenced by whether her big sis,Julia, is a match or not. Julia will be tested next week.

We start treatment on Wednesday of next week, so we are headed home for now. We are going to try to have a "normal" weekend and hopefully get Maddy in to see her classmates one more time before she starts treatment. It is like we are starting all over again! Two more years of treatment, no school, no hair... our hearts are breaking!