Special Needs Spotlight || Mary

Hi Miggy! Thank you so much for having us, again, to your special needs spot light. I’m thrilled to be here to share more of our story with you and your readers. My name is Kimberly. My husband, David, and I have been married 12 crazy, up and down, marvelous years. We have three children, one boy and two girls, and two dogs. Our youngest daughter, Mary, was recently diagnosed with ALL, acute lymphoblastic leukemia.

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Miggy:  Hi Kimberly!  Thanks for participating in today’s spotlight.  You’ve have actually participated in our spotlight before sharing your children William and Mary with us who both have Down syndrome.  But as circumstances have changed we are doing a follow up on your kiddos.  First, will you briefly refresh our memory about your family–who are your children, how old are they and how did you come to find out that 2 of your kiddo’s have Down syndrome?   

Kimberly:  We have three children.  William is 10 and in 5th grade. He loves superhero’s and basketball. Thinks he’s a big deal and is quickly running out of the phase in which the sun rises and falls with me. Despite this I still make him hug me everyday. He is on a special Olympics team that plays basketball, runs track and bowls. He keeps his room clean, takes out the garbage, feeds the dogs. Pretty much he’s the full package, except for that part where I’m not his whole world anymore.

Ruth is 8 and in 3rd grade. She is a planner. Especially of parties. She plays the piano and recently took up volleyball. Her favorite color is rainbow and she asks endless amounts of questions. She loves to cook and bake and not keep her room clean. She is currently working on a self assigned project about the earth. She’s pretty much incredible.

And finally Mary is 6 and in (sort of) Kindergarten. I say sort of because she only attended one day before being diagnosed with leukemia. She is, and always has been, my little side kick.  But was the sort of baby/child that didn’t have to be near me at every waking moment.  In fact I would often find her sitting in the pantry getting a snack. Once I lost her, or thought I did. We found her in the corner behind the couch eating a loaf of bread. From that time on I’ve taught her to respond when I call her name. I’ll say, “Mary, say hi mom!” and then she responds from whatever corner of the house she’s in with a little, “Hi mom.” Since her birth she has almost always had “sweet” attached to her. She can be sassy but in such a sweet way that she probably gets away with more than she should.  Both William and Mary have Down syndrome.  Both of their Down syndrome diagnosis’s did not come until birth.

Miggy:  The main update we’re going to talk about today is that your youngest daughter Mary has recently been diagnosed with acute lymphoblastic leukemia.  How did this diagnosis come about and what was your reaction when you heard this terrible news?  Also, were there signs and symptoms that you noticed or was it completely out of the blue?

   

Kimberly:  Mary’s first day of kindergarten was Friday August 15th. It went perfectly. That afternoon I noticed she had a petechial rash all over her abdomen and legs. Petechiae are smallish red flat spots. They occur when tiny little blood vessels, capillaries, bleed. There are a variety of causes of this. One of which is a decrease in platelets. Which can happen randomly but it can also be a sign of a blood disorder. I had a very uneasy feeling but tried to dismiss it.  My college degree is in clinical laboratory science, so long ago I studied various disease states so I sometimes feel like I know too much.  I have to often convince myself not to overreact. However by Sunday mid morning she had come down with a fever, I knew at that point that something wasn’t right so we took her to the emergency room.  Her blood tests showed that her platelets were at 8,000, normal is 150,000-400,000. The E.R. doctor was at a loss and spent time making phone calls to determine where we needed to go.  He finally found the right person, a Pediatric Hematology Oncologist. But she was an hour away, fortunately they let me drive us there.

The next 48 hours or so were a bit of a whirlwind. As soon as we got to the new hospital our new doctor came to talk with me. She pointed out that she had more than just low platelets, she was slightly anemic and while her white blood cell count was normal her neutrophils (one type of white blood cell that kind of fights off everything) was 0. Instead she had increased lymphocytes (which can go up when we’re fighting off a virus, but they aren’t supposed to take over). Because of these three things she felt strongly that she had either ALL, acute lymphoblastic leukemia, or AML, acute myeloid leukemia. The only way to find a definitive diagnosis is by doing a bone marrow biopsy.  Which was scheduled for the next morning, Monday.  By Tuesday we had the results, ALL, and she had another procedure to place her port o cath (a central line which makes for fewer needle sticks) and she also started chemo that day.

Everything happened very quickly. She’d had blood work done just a few months prior to this without any abnormalities so we believe we caught this fairly early. While I have some serious over-reacting tendencies throughout this experience I’ve had a lot of calming peace. I attribute that to my faith, which I’m so grateful for. The moment we headed to the second hospital, and let both our mothers know and asked them both to get the word out, I could feel our families prayers going with us.

Miggy:  I usually ask parents what their day-to-day life looks like with their child’s specific needs.  Now that you’re a mom of children with Down syndrome and a family battling cancer, what does your life look like now?  How has it differed from before and how have you managed these changes?  (Asking for help?  Schedule or job changes?)

Kimberly:  With Mary going into Kindergarten I had high hopes for what my life would be like with three kids in school all day and all in the same school. After she was diagnosed and we learned that she needed to stay away from groups of people, and anyone who might be a little bit sick, things changed drastically for us.  She will have to stay home from school for the next 4-6 months, we keep her home from church, and most other activities are very limited.  My days are spent managing her care (I have a very thick binder full), keeping track of her medications, and dealing with and combatting the side affects to her different medications.  We’ve also moved her bed and dresser into our bedroom so she’s closer to us.  Which has made the getting up in the middle of the night (think 6 year old newborn) somewhat easier.  And then she has quite frequent doctor visits, which usually involved some sort of chemo infusion.

We stayed in the hospital for about 10 days, after we received her diagnosis. Since she’s come home there was a week we had to take her for fluids almost everyday, because she was so dehydrated. She had mouth sores develop so convincing her to eat and drink was a huge challenge. Once we got the sores under control there was another week we had to take her to have a plasma transfusion (she also received platelets and blood while she was still in the hospital), then there was another week where she was diagnosed with C. Diff. Which is a not so good bacteria that affects the gut. And then last week she was hospitalized because she spiked a fever. Given the fragile nature of her immune system even what might seem as the smallest of illnesses must be taken seriously. She is doing much better now, eating and drinking well. She tires easily and is all around a bit irritable. Even so I look hard each day to see a glimpse of my baby girl. I can almost always find one, sometimes it’s a tiny glimpse but I take the tiny ones with the big ones.

We live less than a mile from my husbands parents and his mom has been a huge help during this time. My mom has come, and will be coming back in a few weeks, which was another huge help. We’ve had so many people ask what they can do before we can even ask for help. Friends bring us meals, drop off “thinking of you” gifts and showered us with so many thoughts and prayers.

Miggy:  I’d love to know how all your children are coping with this new diagnosis.  First, how is Mary doing?  Does she understand what is happening and why?  How are the other two children coping and what adjustments have you made to help the children during this time?

Kimberly:  Mary does understand that she doesn’t feel good. And sometimes she can tell me what exactly hurts. I don’t think she understands what is happening, just that she doesn’t like any of it.  She often doesn’t quite know what she wants, and then gets upset that I can’t figure it out either.  It can be so heartbreaking at times.  She is very weak and doesn’t walk, and only rarely will even bear weight on her legs.  The other day she scooted across the floor, so I’m hoping that is a sign of some of her strength returning. She has also started smiling and interacting with us more.  We have missed her smile!

After we got home from the hospital we decided to give her a hair cut so if and when her hair fell out it wouldn’t be quite so overwhelming.  I had decided I wanted a family picture as well.  Later that night her hair really started to come out.  And a few days later it was mostly gone.  I have since cut it again.  It’s sort of like cotton candy.

The two big kids have done amazingly well.  When we finally had the definitive diagnosis we sat down with them. I knew Ruth would need time to process and ask questions.  While I had hoped we could save the “hair falling out” conversation for later she was already being given meds with that side affect so I couldn’t put it off. In all the things we shared, and we tried hard to keep it age appropriate, the hair was Ruth’s biggest concern.  I think that having it fall out while we were home helped her.  Watching it gradually (over the course of a few days) fall out helped her to see she would still recognize her sister.

With William his compassion comes in the moment. Trying to explain things that aren’t happening right now is harder from him to grasp. Almost every day he asks if Mary will go to school.  But he readily accepts that she can’t go because she’s sick.  He’s quick to say “hi” right to her and sees past the hair loss and the fact that she doesn’t get up and run around any more.

From the beginning of all of this I have worried about these two. How they’ll cope, what they will have to sacrifice and just how all these changes will affect them. We’re trying to tune in more to what they each need. But really they have adapted better than I have thought possible.

Miggy:  Kimberly I think most of us can’t imagine all the challenges you and your husband have had to face, especially the cancer.  Can I ask how you are taking care of yourselves at this time?  Also, friends and family often want to be helpful during this time, but often don’t know how..  What is the best way friends and family can support your family at this time?  

Kimberly:  Such a good question! And kind of hard to answer. Only because that is something that is hard for me. I want to do everything, but I quickly learned that I just can’t. Having the big kids in school makes the days easier. I can rest when she rests and only having one persons needs to cater to is easier than three. For my husband and I we have found that the best thing to do for each other is to communicate. Something that we have to work harder at than every before. When he knows what I need, and I know what he needs, we are better able to balance each other out. Also I’ve found that it’s important that I take a few moments away from time to time. Even if it’s just to the grocery store by myself. And chocolate, chocolate also helps.

Like I mentioned before we have had many people reach out to us. It’s those that have simply sent notes of encouragement or dropped things off without us having to explain our new “no visitors” policy. It’s people saying, “Hey I’m doing such and such.” It’s our school full teachers who have rallied around not just Mary but our entire family. This experience has taught us that support from family and friends is paramount. It takes a village, you know. And not necessarily in the way that lots of people are doing lots of things for your children. More like a village full of people just cheering you on. There have been moments of worry and stress where I stop and breath and think of that village of people thinking of us and praying for us and their strength adds to mine. That is huge.

Miggy:  Is there anything else you want to share about your family, Down syndrome, or acute lymphoblastic leukemia?  Perhaps some advice for families going through something similar?  

Kimberly:  I have known since William was born that children with Down syndrome have a higher incidence of developing leukemia. Which is one of those thoughts I’ve tried not to spend too much time on. On the plus side having that extra chromosome tends to give them a better prognosis.

For ALL treatment is done in phases. The first of which is induction, which Mary finished about a couple of weeks ago. The goal after induction is remission, which surprised us when we learned that remission could come so fast. We just found out that Mary is in remission. Which of course we are thrilled with but by no means is this the end. The thing of about leukemia is that it doesn’t take many cells for a relapse. They’re pretty sneaky, nasty cells. So treatment will continue for another 2 1/2 years. Right now we go weekly but I think there will come a point where, I think, we won’t have to go as often.

I feel like we are still in the beginning stages of this journey, and I know we have a long way to go, but I’ve come to realize how important it is to find what works for your family. So many people will offer advice, and want to hook you up with others in your situation. While that works for some people it might not work for others. Find what works for you. From the beginning we’ve taken things one day at a time. I’m just now being able to start to look out a week or so ahead. Also I’ve limited my consulting of Dr. Google and only gone to resources given to me by our doctor and nurses to learn and gain information. One of the things the doctor told me, in one of our many sit down and discuss things sessions, was that it was important that we do something each day with “Mary without leukemia.” It’s important to have perspective and not to let leukemia take over everything. Raising two children with special needs, I feel, has given me a very different perspective on life. I have drawn on that perspective more over the past month than ever before.

Thank you, again, for having us. I feel honored to be Mary’s mom, and to be on this journey with her. I love being able to share her with others. Over the past month I have seen so many hearts touched by her, it’s been incredible to watch. Feel free to follow along Mary’s journey, Driving Little Miss Mary.

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Kimberly, thank you so much.  I think we all just fell a little more in love with sweet Mary.  What a doll.  I’m sure no one is ever prepared for drastic life changes, but wow… you have really been in a whirlwind these past few weeks.  I am amazed at your strength and adaptability, but as you said you’ve have experience in being thrown a curve ball.  I am so glad to hear about your village of support and love.  I know people can feel helpless in these situation, we all want to help, but don’t know how.   I think what you said is that just doing something–a note, dropping something off–can make all the difference because just knowing you have that support, is what brings you strength and hope.  As another spotlight mom said, just show up.   And yes to doing what feels right for your family–what works for someone else, may not be what works for you.  Great perspective Kimberly.  God bless Mary and the whole family.  Please keep us updated and let us know how Mary is doing.  Big internet hugs!

Always looking for more spotlightees, so please if you know someone who would be wonderful to feature in the spotlight series please tell them all about my blog and then have them email me directly at thislittlemiggy at gmail dot com.  

Have a fantastic weekend.