The story of our lives….

Maddie’s counts were too low to start chemo, but we will try again Monday. We are just going to enjoy this time laying low. We have certainly come a long way in a year. And we are through with the worst of it as long as she stays cancer free. Thanks for checking in!

Love to everyone,

Liz, Brandon and Miss Maddie

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A few quick things…..

First, I want to update y’all that Maddie’s counts were fabulous yesterday on our clinic visit. We were able to stop giving her count recovery injections daily, and she is not immunocompromised (at least for a few days). Sometimes I think I pay too much attention to the counts, and I need to pay more attention to how she is feeling (and maybe listen to her oncologist when he tells me not to be worried). She is feeling great right now!

Second, thanks to everyone who has emailed me reagrding t-shirt orders. I am hoping to place the full order by Monday, so if you want a t-shirt, email me at lizcgorman@verizon.net. More info about the shirts is in my previous post below.

And last but not least, flu shots are available now, and if you plan to come into contact with Maddie during this flu season, you need to have a flu shot. Maddie will get her flu shot this week, but because her immune system is so weakened by chemo, it is not known if the vaccine will actually provide her with much protection. It is important that everyone around her is protected so that she does not come into contact with the virus. Contracting the flu would likely be fatal for Maddie, so this is a very serious subject. Also, the FluMist vaccine is commonly given to school age kids today.  Because the flu virus in the FluMist nasal vaccine is actually a weakened live virus, children shed this live virus for up to 30 days after it is administered. If your child has had Flu-mist within 30 days of a time when they may come into contact with Maddie, please let me know so that we can keep our distance.

As we approach the MileStones Walk November 15th, we are especially wary of all that is going around right now. Please let me know if you have any concerns about the health of your child (or yourself) when we cross paths. It is a strange way to live, but we have to be as careful as possible to keep Maddie from being exposed to germs until she has a normal immune system. She will have a weakened immune system for at least another 18 months and maybe longer, so this is our way of life.

Thanks for checking in on us. This Wednesday, if her counts are good, Maddie will have a bone marrow aspirate to make sure the cancer is still gone and a lumbar puncture to put chemo into her spinal fluid. She will also have another IV chemo and we will be giving her oral steroids for 5 days. The steroids make her crazy, so we will be staying close to home. Wednesday also happens to be the one year anniversary of the day we got the news that something was really not right with our daughter’s blood and that leukemia was suspected. We will not celebrate that day, but instead will celebrate when she has been in remission for a year. That certainly seems to be a better thing to celebrate.

Love to everyone!

Liz, Brandon, and Maddie

T-shirt orders and a short stay in the hospital

Before I start the description of our busy week, I need get together the t-shirt order for the walk. The shirts look like this, though I am having them made locally to save money. The t-shirts are available in both short sleeve and long sleeve. Short sleeve is $11 and long sleeve is $15.  Sizes are adult S, M, L, XL, and XXL. We may offer youth sizes too if I get enough requests, but because the t-shirt people are being really nice and making the screens for free, I do not want to make them do another one unless we need alot of youth sizes. So email me your order at lizcgorman@verizon.net with the subject T-shirt order. Please let me know short sleeve or long sleeve and sizes and quantity. If you are ordering multiple t-shirts for multiple family members, please list the name for each size so that we can label them accordingly to hand them out easily the day of the walk. If you are walking with us, I will bring your shirts to the walk, and you can pay me for them then. If you want to purchase a t-shirt but will not be there the day of the walk, I will be happy to mail them to you, but it will be an additional $3 for postage. You can mail me a check for the total and I will mail them out when I receive them. Our address is 8903 Longview Club Dr, Waxhaw, NC 28173. Please know that you do not have to wear the shirt to walk with us, but I did it so that we look like a team out there. I need t-shirt orders by Monday at the very latest, please email me immediately so you don’t forget!

We have had a busy week here. Sunday Maddie had developed some bleeding of the gums and had lots of bruising, so we knew her platelets were low. We started to go into the hopsital for a platelet transfusion, but decided to try to make it to Monday so that we could just go to the clinic instead of having to be admitted. When we woke up Monday morning, Maddie had been bleeding from her nose and gums quite a bit during the night, so we rushed in, knowing her platelets must be quite low. She also felt really bad and was acting vey unlike herself that morning, so we thought she might be anemic too. It turned out that her platelets were very, very low, just 2,000 (normal is over 150,000). So we got a platelet transfusion immediately. But her hemoglobin was still above 8, so we did not get a blood transfusion, and we left the clinic not quite sure why she was feeling so badly. We did find out that her ANC was just 3, which means that she was still extremely immunocompromised. That could be part of why she felt so bad.

By 6 Monday evening, Maddie had developed a fever. We packed our bags and headed back to the hospital knowing that we would be there at least 48 hours since her counts were so low. They will not release us from the hospital for at least 48 hours after coming in with a fever when her counts are low. Her counts have to show signs of rebounding also for them to release us.

By the time we arrived at the hospital, the fever was gone. They ran blood cultures to make sure she did not have a blood infection from her line in her port. That remained negative and she never spiked another fever. So Maddie got IV antibiotics for two nights and then we were released yesterday in the morning. Her ANC was still just 24  when we were released so she is still very immunocompromised (anything below ANC of 500) and we have a few more days of injections before we expect her counts to have fully rebounded.

We are happy to be home and she seems to be feeling alot better. I am still a little worried because her counts are a little different than they have been in the past. Please pray that her cancer remains gone and that she recovers from this round soon.

Love to everyone,

Liz, Brandon, and Maddie

Hello All!

We are now officially done with all of the hard chemo in Maddie’s protocol, so we are cautiously waiting for her counts to recover. We hope to avoid a fever and any unplanned hospitalizations. It feels great to say that we can finally put the hard stuff behind us, but it is also a little scary as we know the hard stuff killed her leukemia. Taking it away means that we now get to find out if her leukemia is so aggressive that it will come back in the absence of the intense chemotherapy. Please pray that our little princess remains cancer free forever!

In an effort to be optimistic (that we won’t be back in the hospital), I want to thank all of the people who have been so supportive of us over the last year (it has been almost a year!). Without the support of family and friends, we could not have gotten here (with a little sanity still intact). I especially want to thank the staff at Levine Children’s Hospital. We had some exciting times in the hospital, and I know I (Liz) was not always easy to get along with. The nurses were true professionals who did such a great job to take care of our little girl, even with me trying to interfere at every step. I want to thank one nurse in particular, our night nurse Elisia. The night of Maddie’s diagnosis, she was our nurse, and I remember bothering her multiple times that night because I swore up and down that the IV fluid was making Maddie unable to sleep well. Of course, it might just have been the leukemia that was making her uncomfortable and unable to settle down, or the fact that we were confined to a hospital room, she had an IV, or any of the other major changes we were trying to adjust to. But I was blaming the IV fluid, and poor Elisia was nice enough never to say, “You are completely insane!” I think she had dealt with other crazy parents the day of their child’s diagnosis and knew not to be offended by it. But the important part is that despite knowing how crazy and hard to get along with I could be, she continued to take us on as patients when we were in the hospital. She even visited Maddie to say hello on nights when she was working on another unit. In perfect Elisia style, when she was our nurse last week, she came in and drew Maddie’s blood from her line in the morning without even waking us up (which is not easy considering she and I sleep together in a little hospital bed). So we did not get to say thanks then, since we just snored away through (hopefully) our last encounter with her. It is amazing how much little things like sneaking in and out of the room make a difference when trying to get through another night in the hospital.

We really appreciate all of the people who gave us such great care in the hopsital at Levine. If Maddie’s counts are good enough, we hope to visit and bring some holiday treats around Christmas to all the special people on the 11th floor. We will be thrilled not to have to be inpatient during the holidays this year. You would not believe all the gifts Santa brought Miss Maddie in our room while we slept last Christmas Eve, but we still would prefer to be at home in our own bed this year. Levine’s Child Life really does a good job of trying to make the kids in the hospital over Christmas feel special, and that was an unexpected treat.

I also wanted to let y’all know that we were able to travel to my grandmother’s funeral this weekend, and though it was a long trip for a baby fresh out of the hospital, Maddie really did well. We were so happy to be able to be there to honor my grandmother, who was truly a very special lady. I will always admire her for her strength, her intelligence, and her intense love for her family. The number of people travelling to the little bitty town of Weldon, NC  to be at her funeral was truly a testament to how loved my grandmother was. Maddie is her first and only great-grandchild. Once Maddie’s counts are better, we hope to have a longer visit with my Aunt Nita. It was so nice to get to see lots of family and friends at the funeral, since we do not get out a whole lot. Thanks so much to my Aunt Pam and Uncle Clyde for sharing their lake place with us!

One last thing: We are still preparing for the MileStones Walk to raise money for CureSearch on November 15th in Charlotte. I am going to be sending out an email about it soon, and I would love it if you would pass it on to others who you think might be interested. This is the first year they have had the walk in Charlotte, so it is slow getting the word out, but it is a very worthy cause. We will have a gathering as a team for lunch after the walk in Freedom Park. I will be asking for people’s t-shirt orders next week, but I am waiting on the final cost figures. I want to say a big thank you to all who have donated already and especially those who have joined the team and are recruiting other donors. This really means so much to us! I want to say a special thanks to Brandon’s conference group at the Expeditionary Warfare School in Quantico. They gave us a very generous gift to go to our fundraising efforts. We are now almost 2/3 of the way to our goal of raising $5000 for CureSearch. To donate or join our team, click here. To donate, look for the tab that says Support Elizabeth! and to Join the team, click the tab that says Join Elizabeth’s Team! (I know, who the heck is Elizabeth? It made me enter my full name so I could enter my Credit Card info) Anyway, we look forward to seeing everyone out there. Hopefully the weather will be just as nice a month from now!

Thanks again to everyone who has supported us along this journey!

Love to you all,

Liz, Brandon, and Maddie

Done with the bad stuff!

Because I am incredibly impatient, we went in Wednesday to see if her counts were high enough to start. They were very close, so our fabulous oncologist let us go ahead and start chemo. We had her first round at 6 PM Wednesday, and then had 3 more rounds every twelve hours after that. The first two were completed with no real side effects, but the middle of the day Thursday, Maddie developed a fever like she had the last time she received the High Dose Ara-C. The fever was pretty easily brought down with Tylenol, so she was able to feel good once the tylenol was working each time the fever came back.

Brandon arrived from Quantico in time to relieve my mom at the hospital around eight o’clock last night. Maddie’s fever hung around until about 10 PM last night, so we stayed the night at the hospital just to be sure it went down. And since we had to keep it interesting for our last planned stay, we managed to let Maddie’s port “infiltrate” last night, which means that the needle which is stuck into her port that allows IV fluids to flow into her became dislodged, thus allowing her IV fluid to flow under her skin (but not into a vein). So we had to torture her by removing the dislodged needle, then allow some time for the fluids under the skin to dissipate so that we could insert another needle to keep her fluids and IV medicine running through the night. This is something that happens very rarely, but it has happened to us one other time. It is really terrible for her as she hates to be restrained and this process takes alot of holding down. So we really went out with a bang. After it was all over, her fever had broken and it was almost midnight and she was totally wiped out, so we all slept really well for a night in the hospital. We were released as soon as we got up this morning and we are now at home waiting to see how she feels after this round.

This Thursday, my amazing grandmother Frances Cochrane passed away. She had had a rough last year or two, but the events were still somewhat sudden. I am relieved that she is not suffering anymore. We were so sorry not to be able to be there, but we are hopeful that if Maddie is not having too many side effects from this round, we may be able to make the drive to Weldon, NC to be with our family for her funeral tomorrow. My grandmother was an absolutely fabulous woman who has had lots of health issues that were taking the fun out of life for a while. We were blessed to have such a wonderful, strong woman in our lives. She will be greatly missed. We love you Gran!

So we are hopeful that we will take a road trip tomorrow. Then we will have a clinic visit Wednesday to check counts. We pray that Maddie does not develop a fever while her counts are low.  She will be very immunocompromised from about Tuesday of next week until at least 2 weeks from now, but possibly for longer. We will be laying low as much as we can to avoid germs. If she does get a fever though, we will have an unplanned visit to the hospital, so we hope to avoid that if possible.

Love to everyone,

Liz, Brandon, and Maddie

Still waiting…..

Counts were a little higher yesterday, but still not where they need to be. We will go back in on Thursday to try again. We are just ready to start this chemo. We are enjoying our time at home with no chemo though.

Please keep my princess in your prayers.

Thanks!

Liz

Milestones Walk T-shirt

I have been working on a t-shirt design for the walk on November 15th. I will be taking orders soon. There is a new link section on the right side of the page with a link to join (with some instructions) and a link to the t-shirt design.

Let me know what you think!

Thanks! Liz