Coming Home

Whenever Maddy was in the hospital, she always wanted to go home sooner rather than later.  We would always tell the doctors that we had "places to go and people to see".  Maddy would flash her smile and promise to rest, drink, eat, etc. and the doctors would normally give in.

We think maybe Maddy is just waiting to go home now, so with the help of Hospice, we are going to bring her home today.

Merry Christmas

Our family had decided to try to focus on the true meaning of Christmas this year and do something different than worrying about all the stress of buying presents, etc.  We wanted to focus more on inviting Jesus into our hearts and spending more time with family and friends.  While being in the hospital with Maddy waiting for her to be blessed with a miracle here on Earth or to be blessed to be in Heaven with Jesus was not what we had planned, it has allowed us to do what we had set out to do. We have prayed everyday for Jesus to give us comfort and peace and we have been blessed to spend more time with family and friends here at the hospital than we have ever before during the holidays.  

Sometimes God does work in mysterious ways...

 John 3:16-17 says, "For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world, but to save the world through him."

Still Fighting

Maddy was taken off the ventilator this afternoon.  It was a blessing to see her without tubes and wires coming out all over.   She continues to fight...  I guess she isn't ready yet to let cancer win!

Coming Closer to Home

We have decided to bring Maddy back to St. Vs to be closer to home and to be surrounded by the people who have become her second family over the last three years.  We should be on the road by 2:30 this afternoon.

The Journey

Maddy's journey that began three years ago has had many bumps along the way, but as we look back, we are amazed by all of the GOOD that has come out of all of the bad.  We are amazed how our little girl has inspired so many and how she has given us strength even in her darkest moments.  We looked forward to the day when we could celebrate the end of this journey with all of our family and friends who have prayed for us and supported us along the way.  While we are still praying for a miracle that would allow us to celebrate with Maddy here on Earth, we are faced with the real possibility that we may soon be celebrating Maddy's journey to Heaven.  While we keep reminding ourselves that it is in God's hands and that Maddy will be free of all her pain and suffering in Heaven, it doesn't make it any easier...

Monday

Today did not go has we had hoped and prayed.  After the sedation was lifted, Maddy was still showing severe effects of the encephalopathy.  She was examined by the whole team of doctors , so tomorrow, we will be meeting with everyone to figure out our next step.

Saturday

Peaceful day for Maddy...


We received texts and pictures all day of the Bone Marrow Drive- what an AMAZING day!  We wish we could have been there.  Our family has felt like we have been on a roller coaster these past few days-  seeing the incredible outpouring of support for Maddy and so many others who may also one day need a bone marrow transplant has renewed our strength!

THANK YOU!

Friday

Last night was another rough night.  The sedation was not keeping Maddy comfortable and she had several "episodes" throughout the night.  (I can't even explain how difficult this was to watch.)  They did another MRI this morning to make sure nothing new showed up and the results were pretty much the same as Tuesday- atleast no new complications.  They switched up some of her sedation medication and she has been a lot more comfortable today.  

Tomorrow is the bone marrow drive at the high school.  Maddy so wanted to go to this.  We hope it is successful and we appreciate all the effort that has been put into this event by everyone.

Thursday

Maddy had a peaceful night last night.  Russ, Julia and I were able to get some sleep.  After talking to the doctors today, the plan is currently to let Maddy rest and heal until Monday.  On Monday, we will slowly wean her off the sedation to evaluate her status.

This morning, Maddy's nurse was "roughly" performing some oral care and Maddy opened her eyes and had tears (Maddy still has severe mouth sores).  While I didn't like the fact that Maddy was hurting, it was a good sign that she reacted.  Needless to say, Mama Bear came out and the nurse now knows how NOT to perform the oral care!

We want everyone to know how thankful we are for everyone's prayers and support.  

The Plan

Maddy had another bad night.  She is very uncomfortable and the symptoms of the encephalopathy have progressed.  In order to make her comfortable and prevent any further complications, we have decided to put her on a ventilator and sedate her for the next few days to allow her to rest and heal.  After the few days, we will reevaluate her situation.

We are praying for her comfort.

Transfer

Maddy's condition has continued to worsen.  After an MRI this morning, it appears she is suffering from the effects of encephalopathy caused by the intense chemotherapy she recently had to get her back into remission.  This affects her central nervous system and is causing her to have difficulty communicating, walking, etc. and she still appears to be in a lot of pain.  The decision was made to transport her to the University of Michigan.  There the neurologists will hopefully be able to better assess her and give us a plan of action.

Maddy is getting tired-  please pray for continued strength to help her get over this hurdle.    

Rough Weekend

First, the good news-  Maddy had another spinal chemo treatment on Friday at which time they also checked the fluid for "blasts"-  leukemia cells.  Her blast count was down to ZERO-  this is the first major hurdle she had to get over.  We are soooo thankful for this!

The bad news-  the intense treatments seem to have taken their toll on Maddy.  Starting Thursday evening and into the weekend, she spiked more fevers, was vomiting, and experiencing extreme pain in her abdomen and back.  She will not eat and all she wants to do is sleep.  She is currently on two different antibiotics and an anti-fungal to hopefully kick whatever is causing her fevers.  She had some blood in her vomit, so they have her on a medication for her stomach.  They are giving her pain medication for her back.  They have done an ultrasound of her organs and an x-ray of her back.  All of her blood counts are wiped out, so she is getting a platelet and blood transfusion tonight.  We practically had to force her to sit up in a chair for a few minutes today and take four very small bites of food.  The doctors will probably start her on TPN (nutrition through IV) tomorrow since it is going on five days since she has eaten anything.

Hoping and praying that things start to turn around here soon!!!!

Back Again

We might have broken our record for the shortest turn around time-  Maddy came home from the hospital Tuesday evening.  She was wiped out on Wednesday barely able to keep her head up, so Russ took her back to the hospital Wednesday after school for a blood transfusion.  Blood work showed that her white blood count dropped from 1.3 to .3 overnight.  We knew this was not a good sign- no white blood cells means no immune system! Maddy and Russ got home about 10:00 on Wednesday after her transfusion.  By 3 AM, she spiked a fever and was headed back to the hospital.  The conversation with her doctor went something like this:

Operator: "I have Dr. Kitchen on the phone, go ahead."
"Hi, This is Dorothy"
"Fever?"
"Yea"
"I'll get her a bed."
"OK- See you in a little bit"

After three years, not much more needs to be said.  Maddy got to the hospital and they started the regular routine- cultures, antiobiotics, blood work.  Her fever did break after some tylenol and so far has stayed away.  She slept most of the day and is back to not eating.  Her white blood count went down from. 3  to .2 from Wednesday evening to Thursday early morning.  It looks like she will be in for the long haul until those counts start heading back up.  Her platelets have also bottomed out so she will get another platelet transfusion tomorrow...

We are all a little exhausted!

Home

Maddy is home!

She made it through five days of chemo, a platelet transfusion, and two spinal taps.  She is very tired, but we hope she feels good enough to go to school the rest of the week while she can.  She will have blood work on Friday and will most likely need transfusions this weekend.  She is scheduled for another spinal tap on Tuesday-  we are hoping the leukemia cells are gone by then!  They have been decreasing with every treatment.  We have an appointment on December 13th at the University of Michigan to meet with the bone marrow transplant team.  We will hopefully have a better idea of our next steps after this visit.

We will keep you posted.

I know I mentioned this in my last post, but I want to say again how blessed our family is to be surrounded by so many people who care about us.  We had already decided as a family before Maddy relapsed to do something different this Christmas.  We wanted to focus on the real meaning of Christmas- a celebration of God's love for us- giving of ourselves not just of material gifts.  Maddy's relapse was another bump in the road (or more like a gigantic pothole) in our journey that tested our faith.  However, in our darkest moments over the past couple of weeks, we have been lifted up by the prayers, support, kindness, and generosity of everyone around us.  We have experienced the true meaning of Christmas- who could ask for more!

Finally, we just want to share information about the upcoming Bone Marrow Donor Drive...  hope to see many of you there!

Current Plan

Maddy is in the hospital.  She went in this morning and had another spinal tap to receive chemo.  She also had an MRI and an EKG.  The white blood cell count has come down in her spinal fluid, which is good.  Her MRI and EKG looked good too.  The plan now is to start the systemic chemo-  Dr. Jasty decided on what she felt was the best combination for Maddy.  She will receive two different types of chemo for the next five days- barring any serious complications.  Then on Tuesday, she will have another spinal- hoping that this takes care of any remaining leukemia cells.  At that time, Maddy should be able to come home to "recover" as long as no fevers, etc. set in.  We then have an appointment scheduled for December 13th at the University of Michigan to talk to the Bone Marrow Transplant Team.

Knowing this, some of Maddy's friends and family have begun planning a Bone Marrow Donor Drive.  The purpose of this drive is to get as many individuals as possible registered with the National Bone Marrow Registry.  This registry is the method used for finding a bone marrow match for someone in need of a transplant.  A simple cotton swab to the cheek is the only process involved in a bone marrow donor drive. 

The drive will be taking place on Saturday, December 15th at the Archbold High School gymnasium.  The event will run from 10:00 a.m. to 4:00 p.m. 

Our family is once again reminded of how fortunate we are to be surrounded by so many people who care about us!  We can't thank everyone enough for all the thoughts and prayers that have been coming our way!  

Where We Are

Today, Maddy had surgery to put in another catheter and also received another spinal chemo treatment.  Maddy's bone marrow came back free of disease, so we need to keep it that way.   Everything went well and we are home for now until Thursday.  We spoke to Dr. Jasty today about what our next step will be.  Because there is no standard protocol to follow for Maddy anymore, she is checking with colleagues to determine the best course of systemic chemo treatment.  The goal right now is to get her spinal fluid cleared of disease and also treat her systemically to prevent the leukemia from returning in the bone marrow.  As this is happening, we will be going back to the University of Michigan to consult with the bone marrow transplant team and start a donor search as this looks like where we are headed.

For the next two days, we are going to attempt to go on with life as "normal".  Russ and I have some things to figure out from that point...

Peach's Neet Feet

In all the turmoil of the last few days, we neglected to share something special that Maddy received.  An awesome organization, called Peach's Neet Feet, custom paints shoes for children who have disabilities or long term illnesses.  Maddy received her shoes last Wednesday.  They are AWESOME!

If you would like to read about this organization, the web-site is below:

http://peachsneetfeet.com/

Maddy's Poem

Relapse News

Yesterday, Maddy had a "diagnostic" spinal tap as part of maintenance and had her PICC line removed.  We were so excited-  Maddy was finally "free" and she was looking forward to the next four weeks of being able to shower freely and she was even given permission to swim.   It was late in the day when she had her procedures, so we did not get any results of the spinal tap before we left the hospital.  We received a call today!  It was not the news we wanted to hear.  Leukemia cells were found in her spinal fluid again.  We are in a state of disbelief right now.

Maddy will go back to the hospital on Friday to receive chemo in her spinal fluid and have a bone marrow test- praying that there are no leukemia cells in her bone marrow.  She will then go back on Monday to have a catheter put back in and receive another chemo treatment.  Depending on the results of her bone marrow test and on the success of getting her back into remission determines our next steps.

Maddy continues to amaze us.  She saw her dad and I crying when we received the call from the doctor.  I found her in her bed crying.  SHE KNEW!  She asked "Why?" and said she just wanted to have hair again.  I reminded her that God had a plan for her and that she could do this.  She cried for her sister who was in her room crying.  We all hugged and cried a little longer.  Then Maddy jumped up and said that we had better go swimming while she had the chance, so we went out and rented a room at the Heritage Inn and Maddy swam and swam and swam...   we get our strength from her!

Three Year Anniversary

November 12, 2012 marks the three year anniversary of Maddy’s diagnosis of leukemia.  While we wish we could erase all the pain and suffering that Maddy has endured due to this HORRIBLE disease, we as a family never want to forget the amazing experiences we have had throughout this journey-  experiences that have taught us about generosity, love, hope, and faith. 

The last three years have made us come to appreciate the simple things in life more than ever!

With the holidays quickly approaching, we started thinking about what is truly important to our family.  Often, for our family, Christmas comes and goes so quickly and the focus of Christmas is on buying and receiving gifts and all the stress associated with this and NOT on what Christmas is really supposed to be about- a celebration of God’s love for us.

 John 3:16-17 says, "For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world, but to save the world through him."

So, this Christmas, our family is going to focus on inviting Jesus into our hearts this coming holiday season and celebrating the true meaning of Christmas.  We are going to take time to stop and enjoy the company of family and friends and not worry about making sure all the presents are bought.  We would also like to “pay forward” all the kindness and generosity our family has been shown over the last three years.  To do this, we are asking not to receive any gifts this year but instead ask those of you who normally give us gifts to donate a little extra to one of your favorite charities.   We are also planning to take the money we would normally spend on gifts and donate this amount to various charities to help those less fortunate than us in your honor.

We hope that this holiday season is a time that everyone can celebrate the simple things in life!

A look back at the last three years...

Almost

I have been holding off posting lately in hopes that I could announce that Maddy had made it through the first of her 5 ten week maintenance treatment cycles and was on to the next.  She was due for a diagnostic spinal tap and the start of Cycle #2 tomorrow, but her counts did not make it so everything is postponed.  Hopefully, next week she will get back on track.

We have had a couple ups and downs this past cycle.  Because she had to have her catheter removed due to infection and a temporary Picc line put in, she will have to have surgery in December to place a new port-  Maddy decided she wanted to go back to a port instead of the catheter this time.  She has also been having some heart palpitations so she is currently hooked up to a heart monitor.  The last four weeks of chemo have also really knocked her counts down.   All of this has taken its toll on Maddy-  she gets tired easily and even goes to bed early on her own without  being told! She is a trooper though and keeps pushing forward usually with a big smile on her face!

Hope to post again soon with the news that we are on to the next cycle...

Home

Well after much debate, Dr. Jasty won out and Maddy had her catheter removed today and a temporary PICC line put in to avoid any further complications due to the infection.  On top of that, she also got her flu shot.  Needless to say, Maddy was ready to leave the hospital.  Once we got all equipped with the portable IV pump and a week's worth of  IV antibiotic, we were able to leave.  It is good to be home even though our furnace is not working and it is only 61 degrees in our house...  BURRRRR!

How Quickly Things Change

It had been a while since I posted so I gave an update on how well things were going on Wednesday- I must have jinxed us!  On Thursday, Maddy ended up in the hospital and she is still in.  We had noticed a red mark on her neck a couple days prior.  We didn't think much about it at first-thought maybe she scratched it or something rubbed it.  It wasn't until Thursday morning when the redness was still there and it perfectly followed the path of the catheter cord in her neck that we got a little worried.  After talking to Nurse Yoder at school, I mentioned it to the nurse at the clinic on the phone...  Needless to say, we were told to report to the hospital.  The red line traveling along the cord was a sign of infection- the only sign Maddy had.  They thought at first the infection was just around the outside of the catheter in the track where the cord runs, but blood cultures showed signs of infection in both lumens as well. We are now playing the waiting game treating Maddy with high doses of antibiotics in hopes to clear up the infection so that her line does not have to be pulled.  This, however, puts all her chemo on hold.  Also, Maddy's oncologist is worried that the infection will continue to come back.  We will hopefully know a little more tomorrow and by Monday or Tuesday will possibly be able to make a final decision on what to do.  YUCK!

Conquer Childhood Cancer Now

It has been a while since I last posted, so I thought I would give a quick update.  Maddy continues to do well.  She is enjoying school and is getting reacquainted with all of her friends.  We are still working on   helping her deal with her anxiety and her "perfectionism"-  don't know where she gets that!  : )  Some days are better than others, but she is getting there.  We are 6 weeks into Maintenance and all is going well.  Starting next week, she will have weekly clinic visits for the next four weeks for IV chemo.  Then she will have one cycle done and four more to go!  Our goal now is for her hair to grow back. Due to the radiation, the little hair she had started to fall out.  Again, it was getting into everything, so it was time to shave the remains.  As she sat on the front porch and I started to shave her head yet again, Maddy said for the first time, "I am getting tired of this!"  That pretty much sums things up...

On another note-

September marked Childhood Cancer Awareness month.  Conquer Childhood Cancer Now (CCCN), a local organization that works to raise awareness about childhood cancer and provide resources to families, spent most of the month spreading the word and doing fundraisers for their cause.  Maddy was fortunate enough to be a part of their Awareness Day at the mall in Defiance this past Saturday.  The event consisted of a bake sale, vendor fair, live auction, and the "Queen" contest.  Maddy was given the privilege of crowning the "Queen".  The day was successful, and as usual, the generosity shown by the community was amazing!

End of Radiation Celebration!

Lately, we have looked for any reason to celebrate.  Today marked the end of radiation, so Maddy decided this was cause to celebrate!  To start this celebration, we went out for dinner- Chinese of course with her Chinese food buddies Miss Heckel and Mrs. Buehrer.  She will also be bringing donuts for her classmates and staff at the elementary tomorrow! It has been great to see Maddy at school and so happy lately!  We hope to continue to find more reasons to celebrate!

Radiation
(and Maddy got to bring the mask home-  great for Halloween!)

                                  When the doctor is away the patients will play- or atleast this patient!

P.S.

The 2012 Cure Search Walk in Toledo was a huge success raising over $30,000 for childhood cancer research.  Thanks to everyone who donated!

Welcome to Maintenance!

Maddy has officially started Maintenance!  She had a clinic visit and got all of her home meds today.    She then went for her first radiation treatment.  Mom cried, but Maddy did great!  We now have the "plan" for the next 50 weeks.  We are praying for no more set backs!

Maddy thrilled with her first evening dose of meds...  37 and 1/2 pills!

A Picture Is Worth a Thousand Words!

Heading off to school on the first day...

Start of a New Phase

While many kids are dreading the start of school and the end of summer vacation, there is rejoicing in the Lambert house!  We found out today that Maddy will officially be able to go to school tomorrow-  the first day of fourth grade!  Of course, it will be an adjustment-  she is used to staying in her PJs all day while "doing" school at home, but she is so excited!

Maddy completed the last chemo treatment in the Intensification II phase last Thursday.  Once her blood counts stabilize from this treatment, she will officially start the Maintenance phase for a second time.  Because she relapsed in February 2011 in her spinal fluid, she will be getting cranial radiation for 10 days at the start of the Maintenance phase.  This is tentatively scheduled to start next Monday-  she will be going to the clinic for bloodwork on Friday to determine where she is at.

We are just so glad to be back at this stage and hopefully will have no more set backs!



Again, just wanted to remind everyone that:

Coming up on September 8th is the second annual CureSearch Walk in Toledo.  All the money raised by CureSearch goes directly to children's cancer research and resources.  You can go to the link below to check it out and donate to this cause:

http://www.curesearchwalk.org/toledo/maddy

Did you know:

• Every day, 36 children are diagnosed with cancer.
• Children's cancer affects all ethnic, gender and socio-economic groups.
• The average age of children diagnosed is six.
• More than 40,000 children undergo treatment for cancer each year.
•  Cancer is the leading cause of death by disease in children.

September is also Childhood Cancer Awareness Month-  wear your GOLD ribbons!  

End of Cycle 4

After the usual delays, Maddy's counts were finally where they needed to be to start her last high dose methotrexate chemo treatment today.  She will be in the hospital for a few days for this treatment and then will have to recover before one more chemo treatment to complete this last cycle of treatment in this phase.  Once this is done, she will have radiation and then finally hit the "Maintenance" phase.  We go for a consultation next week for radiation since this will be a new experience.  We are hoping for minimal delays from this point on so that Maddy can get back to school ASAP.  It looks like she won't quite make it for the start of school, but we are hoping she will make it back shortly there after.

It is hard to believe that Maddy is going to be a fourth grader and Julia an eighth grader!  Boy does time fly!

Coming up in September is the second annual CureSearch Walk in Toledo.  All the money raised by CureSearch goes directly to children's cancer research and resources.  You can go to the link below to check it out:

http://www.curesearchwalk.org/toledo/maddy

September is also Childhood Cancer Awareness Month-  wear your GOLD ribbons!

July Update

Maddy was able to get out of the hospital on July 4th to spend time with family over the holiday. She was also able to be home when some relatives came in from New Jersey on July 9th. This was nice! Her counts bottomed out though as expected and she has had to have two platelet and two blood transfusions. She also has had to have "the shots" daily to help her white blood cells come back. With her counts so low, she ended up spiking a fever on Friday and had to go to the hospital. Something grew on one of the cultures, but the antibiotics seem to be working, so hopefully she will be able to come home by Wednesday. Not soon enough for Maddy! She continues to be experiencing a lot of stress and anxiety. We are trying to work through this and get her some help dealing with all the thoughts and feelings she is having. This is harder though to help her get through than all the physical pain she has experienced over the last two and a half years! All the continued thoughts and prayers are very much appreciated!

Cycle 4

Maddy was actually able to start Cycle 4 on time on Monday. We hope to finish up treatment and be able to get out of the hospital Wednesday afternoon in time to spend some time with family on the 4th of July. Her chemo treatment is going well, but Maddy is experiencing a lot of anxiety. She is worrying about everything! Her dad and I don't know how to help her. It is very frustrating and breaks our hearts to see her "beat herself up". We are praying that she can find some peace and comfort.

Winding Down

It has been a while since I posted, but no news is good news.  Maddy has been doing well and feeling well.  She goes in tomorrow for a spinal treatment which marks the official end of Cycle 3 in this current phase of treatment.  She is scheduled to start Cycle 4 as soon as her counts allow which may be as early as July 2nd.  However, Maddy has notoriously been delayed, so the next cycle will most likely start a little later.  If she follows her usual pattern, the six week cycle will last 10-12 weeks, but then we will be heading into Maintenance which will last about a year.

We are praying for no set backs!

Photo Booth

Looking back at all the pictures taken in the photo booth at Relay for Life, it looks like everyone was having a lot of fun.  If you want to check out all the pictures and/or buy additional prints, go to:

http://www.profunpics.com


Click on "Event Pics" on the left and choose "ABC 4 Maddy Relay for Life" event.  You will get a chuckle!

Relay Pictures

Just a few...

Relay for Life

Everyone is napping and I am getting ready to, but wanted to take a minute to thank everyone involved with the ABC 4 Maddy Relay Team for making it another AWESOME event!  I can't begin to list everyone I want to thank in fear of missing someone since so many were involved.  Overall, the Fulton County Relay for Life event raised over $152,000.  $22,500 of that total was raised by the ABC 4 Maddy team!  What more is there to say...  I'll post some pictures soon.

Home

She's home...

Quick Update

Thought I would give a quick update since I had not posted in a while.  Maddy went to the hospital on Monday and her white blood cells and platelets were finally high enough for her next treatment-  she had to get a blood transfusion first though because her red blood cell count was so low.  That meant she did not get started with her chemo until about 8 PM last night.  She finished up with IV chemo around 8 PM tonight and will have to take an oral chemo drug for a few days.  The goal is to get her home by Thursday-  just in time for Relay for Life!  She is so excited for Friday.  We are just glad it seems to be working out for her to be home in time.  We were already planning our escape just in case...

We hope to see many of you at the Fulton County Fairgrounds on Friday.  The events start around 6 PM. Queen Frostine will make "her" appearance at around 8:30 PM.  It is shaping up to be an AWESOME night!

Back Home

Maddy was finally able to come home today.  Her fevers have stayed away.  We still have to give her her shots and she now is hooked up to IV antibiotics-  we are getting good at figuring out how to work her portable pump!  All of her counts (red blood cells, platelets, and white blood cells) are still low.  She had to get another blood transfusion today before coming home and will probably need platelets Friday.  Have we mentioned lately how grateful we are to all those who donate blood and blood products!!!!  

Unfortunately, all of Maddy's beautiful hair is falling out again.  Maddy wants to shave her own head-  she mentioned something about a mohawk.  : )  I will be sure to post some pictures if she gets her way.

Happy Mother's Day

Maddy and I spent Mother's Day in the hospital.  Maddy spiked a fever Saturday afternoon and we had to go to the hospital.  With her counts so low, they don't take any chances.  They started antibiotics right away and she also had a platelet and blood transfusion.  Now we just wait to make sure her fever stays away.  If it does, she will hopefully be able to come home on Tuesday on the antibiotics.  Russ and Julia came up today after the choir concert so Russ and I could do the changing of the guard at the hospital.  When Julia and I were leaving, her temp was 99.6...

I have learned a lot over the last two and a half years, but this weekend reminded me of one of the most important lessons I have learned and that is to take advantage of and be grateful for times you are able to spend together as a family.  I think in the hustle and bustle of life we sometimes forget this.  Being together as a family would have made this the best Mother's Day ever.  Maybe next year!

Cycle 3 Update

I am happy to report that Maddy did very well this time with the ARA-C chemo treatment.  She went in last Tuesday and was home by Thursday evening.  She wished away all fevers (and drank cold water before the nurses took her temperature just in case- sshh!)  : )   We also continued the eye drops a little longer than usual, so her eyes didn't bother her as much.  It is amazing what the power of prayer can do!!!

Now we wait for her counts to recover.  She got platelets today and she will get blood work again on Friday to see if she needs a blood transfusion to amp up her red blood cells.  She has to have those daily shots to help her white blood cells recover which are NO fun and make Maddy grumpy.  Maddy takes it out on her dad since he handles the needle.  Mom gets to put the bandaid on!  Right now, her white blood cells are so low that she has no immune system.  That means masks, hand sanitizer, and no crowds.

If all goes as planned (which it rarely does) Maddy is scheduled for the next treatment in this cycle on May 21st.

Cycle Three

Maddy's counts are finally where they need to be so she will be heading to the hospital tomorrow to start the third cycle of chemo in this current phase of treatment. This cycle starts with Ara-C. This is the chemo that Maddy's body just does not like. We are hoping and praying all goes well and Maddy can come home in a few days. Maddy had such a good week last week. She was feeling good and she not only was able to go to Ladies Night Out on Monday, but she was also able to attend Ag Day with her class on Friday and the bake sale for Relay for Life. (The bake sale was a huge success raising over $1000.) This makes going into this week a little easier for her!

Ladies Night Out

Maddy is gearing up to start the third cycle of chemo in her current phase of treatment.  She was supposed to begin today, but as usual, her counts have caused her to be delayed atleast a week.  The one positive thing about being delayed this time is that Maddy had a lot she wanted to get done this week, so she was happy.  The ABC 4 Maddy Relay for Life team is in full swing and Maddy really wanted to attend a couple of events that were scheduled this week starting with "Ladies Night Out" on Monday.  This event was organized by the 5 wonderful ladies pictured with Maddy and it was a huge success raising over $3600 for Relay for Life.  There is also the bake sale sponsored by ABC 4 Maddy scheduled for Friday at the Archbold Relays track meet.  Maddy is excited about this event as well.  She is going to bake cookies with grandma!

Maddy is looking and feeling well and that makes us VERY happy!  Seeing her get excited about these events and enjoying life is so much fun.  It is times like these that give us the strength to make it through the hard times!

Easter Blessings

Maddy has been spending time recovering since our last update.  Her counts were not where they needed to be, so we were able to spend Spring Break and Easter together without any hospital/clinic visits.  This was very nice!  On Monday, she had bloodwork and was good to go for her next treatment so she went to the hospital today with Dad for her chemo treatment.  This of course, takes all day and night by the time she gets hydrated, gets her chemo, and then gets more hydration.  Russ and Maddy are hoping to be home before midnight.  Then, next week Maddy is scheduled for a spinal.  If this goes as planned, she will have finally completed the second cycle of this four cycle phase.  These cycles were supposed to be six weeks long but have turned into 10-12 weeks long each.  : (  Only two more to go before we will get to maintenance.   Because Maddy relapsed in the spinal fluid, she is going to have to get radiation when she starts the maintenance phase.  This will be new and we aren't quite sure what to expect.  A little scary... actually a lot scary!

Home

Maddy is home.  On Saturday, she did escape the hospital and attended her sister's confirmation.  She drank her whole Gatorade just as she promised she would.  We then all went back to the hospital and brought food in and took over the family lounge on the sixth floor.  Julia never complained about having to compromise on her big day-  she is a very special big sis.  Maddy was discharged on Sunday afternoon.  The mouth sores are taking over and Maddy is tired-  she took a three hour nap today.  As usual though, Maddy is a trooper.

Confirmation Day

Feeling Better

To pick up where I left off- Maddy had her chemo treatment on Wednesday evening as planned. The chemo runs for twelve hours, so when it was done Thursday morning, they sedated Maddy to check out her central line. They discovered once they cleaned away all the blood that what they thought was the cuff of the catheter coming out was actually tissue. They were able to cut that away and resuture. She was then good to go for the next twelve hour chemo treatment. Maddy is sore, bruised, and now tired, but otherwise in good spirits. When she found out that she was not going to get out of the hospital until Sunday, she even convinced the doctor to let her escape for a little while to attend Julia's confirmation. She had to promise that she would keep drinking while she was gone. Luckily, the ceremony is at a church in Toledo very close to the hospital. We will then bring the party to the hospital. I hope they don't mind us taking over the family lounge!

In for Treatment

Maddy's counts finally recovered, but surgery didn't have an opening on Tuesday, so she went went to the hospital today.  She started the morning having surgery to put her central line back in.  Then there were some delays, so she won't start her chemo until sometime around 11:30 PM tonight.  Maddy is hurting which breaks our hearts.  Her site was also bleeding after surgery, so they had to change her bandage already which was traumatic for Maddy. When they changed her bandage, they noticed that the "cuff" of the catheter (the part that holds the catheter in) was slipping out.  Of course, this is not good considering we need the catheter to stay in for the long haul.  The surgeon's assistant didn't want to put Maddy through anything more tonight, so they may look into trying to fix that tomorrow if they can.  : (

All of this, and we are trying to get ready for Julia to be Confirmed on Saturday.  Our hopes were that Maddy would be out of the hospital, so we could be together for the event.  It is currently not looking good...  so the 6th floor at St. Vs better watch out because we will have to bring the party to Maddy!


P.S.-  Thanks to everyone that participated and/or donated to the St. Balderick's event.  It was very successful.  As always, we feel blessed to be surrounded by such caring people!

Update

I just noticed that we had not posted an update since March 3rd and it is already March 18th-  this month is just flying by so fast.  Since our last post, Maddy has managed to stay home for the most part with the exception of a trip to the hospital for transfusions.  We have just been waiting for her counts to recover so she can start her next chemo treatment.  It has been postponed a couple of weeks now.  She is getting bloodwork on Monday and will hopefully go to the hospital on Tuesday.  At this time, she will have surgery to replace her central line catheter and remove the temporary picc line.  Then she will have her chemo treatment.

The delay has allowed us to enjoy the beautiful weather.  We have been able to take walks, play outside, and we went to visit Aunt Alicia this weekend and visited the Cleveland Zoo.  Life has been good!


Tomorrow, Russ is going to have his head shaved at the the annual St. Baldrick's event held at Terry Henricks in Archbold.  All the money raised through this event is donated specifically to finding a cure for childhood cancer.  You can see all the details at:

http://www.stbaldricks.org/events/mypage/4276/2012

We want to thank everyone in advance for supporting this event and for honoring Maddy!!!

Home Sweet Home

We are all home at last!

Hospital Stay

This week isn't turning out much better than last week for Maddy. She came to the hospital on Sunday for platelets, spiked a fever, and has been in the hospital ever since. The doctors can't find the cause of her fevers which they say sometimes happens. Her immune system was wiped out with the latest chemo treatment, so they are very cautious and aren't going to let her out until counts improve and fevers stay away... : (

Rough Week

It has been a rough week at the Lambert house. We were with some family over the weekend and we picked up a flu bug. Everyone we were with started getting sick. On Tuesday, Maddy started to vomit. We took her to the clinic and she was admitted to the hospital- she was dehydrated, needed platelets, and overall, just did not feel well. On Wednesday, Julia was sick. Maddy got to come home, so we quarantined Julia to a room upstairs. Then, on Thursday, mom got sick. Maddy also started vomiting again. We called the doctor and found out that Maddy has C. Diff.(they had done a culture while she was in the hospital and it had come back positive). This is due to the high doses of antibiotics that she has been on for her central line infection. Now she is on yet another antibiotic for the C. Diff. Fortunately, she has been able to keep the pills down or she would have had to go back to the hospital. We are ready for the weekend!

On a more positive note, the ABC 4 Maddy Relay for Life team is in full swing. The team has recently designed the new "team t-shirt" for this year. They are AWESOME! Below, you can see the shirts on the Lady Streaks. The girl's basketball team is wearing the shirts during their tournament run.

Also, the annual St. Baldrick's event held at Terry Henricks in Archbold is quickly approaching.  All the money raised through this event is donated specifically to finding a cure for childhood cancer.  You can see all the details at:

http://www.stbaldricks.org/events/mypage/4276/2012

Finally Coming Home

After getting her central line removed and a new picc line put in on Tuesday, Maddy started her chemo. She finished up with that on Thursday evening, but since she spiked fevers, she wasn't able to come home on Friday. The doctor said if she didn't have any more fevers on Friday that she would be able to come home Saturday. We made sure to drink a lot of cold water before temperatures were taken on Friday (Ha Ha) and Maddy was good to go. Unfortunately, her blood counts have already started to drop so she has to get a blood transfusion before she leaves. She is getting that now and then we should be on our way... Finally!

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!