It is coming up to a

powerful anniversary for my daughter and my entire family. This week will be a year since Julia recieved her last dose of chemotherapy. She has been off-treatment for one tenth of the time required to be considered cured.  She has never gone this long without relapse and I am rejoicing in a cautiously optomistic way. In another nine years she will be cured of this plague that has been set upon her and so many of our friends. 

Leukemia is considered one of the “better” cancers for a child to get. The cure rates  are supposedly so much improved over the past 30 years. According to the Leukemia and Lymphoma Society, “From 1999 to 2005, the five-year relative survival rates … Acute lymphocytic leukemia (ALL): 66.3 percent overall; 90.9 percent for children under 5. ” I don’t know how convincing that is for you, but for me … not so much. Five year survival rates don’t apply to blood  and bone marrow cancers. Ten  years cancer free and THAN we can dance… and the dancing is where I have a problem.

Truthfully, this time I am not really lecturing anyone about cancer awareness or the fight to save our kids’ lives. I am writing about myslef and the survivor guilt a friend can feel when her child is doing well while others around are relapsing and getting sicker. I am struggling in ways I didn’t think I could. My heart hurts more than you would think, knowing my daughter is well at this time.

I think in addition, I may besuffering from post traumatic stress combined with the survivor guilt. This feeling can make me feel empty and it is the reason, I believe, I haven’t been writing much. I use this blog in many ways, as therapy and at first really enjoyed writing about our daily or weekly doings. These days, I have not much to laugh about.

I am blessed, for lack of a better word, to have my family intact and healthy. I am so heart sick that there are so many out there who are not so lucky.

I am not looking for my good fortune to be pointed out to me. I am aware of it and try to mention it in each post I leave here.

I have decided it may be just as therapeutic and cathartic to journalize our family’s emotional recovery here … or at least mine. If you are looking for a feel good fuzzy feeling each day, I am not your girl. If you want a real look at the emotional roller coaster that I, and I believe many other parents are on, jump in and feel free to leave comments. I really would love to hear what others think of this woman on the verge of a breakdown!

This is a rambling post, I know…. thanks for hanging in there so far! Ultimately I am holding onto the original mission of Strawberry Seeds and trying not to wallow in too much goat crud. We’ll see how that goes. Thanks friends.

As a nurse and a mom of a cancer fighter, I have been asked many times over by concerned parents, how I knew something was wrong with  my daughter and how would they ever know if their child had cancer. There are so many answers to this last question. Frankly there are probably as many answers as there are children and different forms of pediatric cancer. Unfortunately the only true answer I can give is, “Go with your gut.” If I told you I knew right away my child had leukemia as soon as I saw her bruising, I would be lying. I did know however that something was horribly wrong and I needed to get her to the pediatrician. Mother’s Instinct may not come with a medical degree but it usually has the ability to get you moving to one real quick!

I was fortunate that my kids’ pediatrician did know what was probably going on with Julia and told me to go right to the Emergency Department of the University Hospital since he would be sending us there from his office anyway. I will always treasure that advice and appreciate that he sent us where we would get the care she needed though he did not have privelages at that hospital and would have to give up his care of her. The blood work was done and the diagnosis was made within hours and by the next morning our heads were still spinning, but our baby was in the Pediatric Intensive Care Unit in respiratory distress and chemo was begun that day. This is, of course, many stories for many other days, but I know that getting her to the hospital when we did made all the difference in her survival … at least at that point in the battle.

There are so many signs and symptoms of cancer that can mimic so many other illnesses in childhood, but I am going to list several here just for your own information. If your child suffers from any or several of these and you cannot get your doctor to give you a diagnosis it may be time to seek a second opinon.

• Fatigue and listlessness
• Fever
• Pallor
• Fever
• Either sleeping too much or not able to sleep at all
• Change in personality and disposition.
• For the potty-trained child ~ a regression in those habits
• Falling and tripping
• Bone pain
• Double vision
• Nosebleeds or unexpected bleeding from other areas of the body
• Easy and frequent bruising … these are usually unexplained and painLESS bruises.

I always tell parents, both at work and “in real life”, to always trust their own instincts and they will never go wrong. Most of you will never need this advice, but for those that do, push your doctors for answers and if you don’t get them then move on to another doctor. You may not know the medical jargon but you know your child.

Peace,

K

P.S. For those that feel like they have “seen this before”, I did write about this subject back in Septemeber and included some other Signs and Symptoms in a more emotional post. Feel free to cross reference!

I was thinking I should use this picture for Wordless Wednesday, but I realized I had too much to say about it to keep it Wordless.

 Take a look … what do you see? Is this a picture of “digging yourself into trouble”? Maybe you see “hiding from trouble”. I see a combination of  “If I just keep digging I think I can find it!” and “Shhhh…. don’t tell them I am here.” 

Alright, so I am in a puppy frame of mind! Madly in love with our four month old Golden Doodle (who is black by the way) and everything good and bad seems to somehow com back to her these days!

Enjoy!

I have a new Mantra … and yes I came up with it all by myself… and it only took me 45 years!

We are all set on a particular journey but  we can choose the path we travel.

I found this to be true during the course of many struggles AND joys in the first part of my life. I am hoping, as I start the second part that I will continue to act on this. I know what it means to be dealt a bad hand. I know what it is to wallow in the self pity. I know what it is to embrace the pain. I know that if I continue to make certain choices it will head me back to the road I really didn’t want to be on. I know now that there are ways to deal with the bad times that jump up in your way or try to derail you on your “journey”.

I have, in my stumble through the years, chose some really not-so-good ways of dealing, some disasterous ways and some fantabulous ways! I have been duped into thinking that because somthing or someone comes into my life that I must embrace them and try at all costs to hold on. I am sure I have also bypassed some extraordinary people and experiences becasue I was so busy searching out the nonsense.

So I have not been blessed to come into this world with a great support of family or money in the bank. I wasn’t given the skinny -beautiful gene and these, as it turns out, were blessings in disguise! Lord knows, I can be pretty sure my friends aren’t “hangers on” looking for the handouts or the fame! They are here because they, like myself, are getting something else out of relationships with friends. I have been forced since childhood, to build my own character and make it strong enough to withstand the forces that try to knock it down. I have had to fight for much, learn to let go of a lot and I think I finally am learning to just look ahead and enjoy the jpurney for what it is.

How was that for a heavy Monday morning babble. Hey, when I finally learn something I think I should be generous enough to share! Just sayin’ ….

Peace,

K

To say it has been a whirlwind this past few weeks is to put it mildly. The kids have been in their usual “kid schedule” which, of course , means I have been a taxi driver and short order cook, but I am happy to say that our day to day life is quite normal these days … relatively speaking. Tom is working, I am working, kids are in school and we aren’t in the hospital, so all is well.

Our first and biggest news is that Julia has had her monthly visit at the hem/onc clinic and not only did she not pass out with her finger-stick (yea, she still screamed like she was being butchered …. baby steps!) but her blood work came back perfect! We are happy to realize that next month’s visit will be one year off treatment and cancer is still history for her!

In honor of her battle and, God willing, recovery we have started Julia’s Rainbow Fund. We are setting this up so we can assist families that find themselves in the same creaky boat we did and are taking on water too fast to even stay afloat. No family should have to sacrifice their entire way of life or suffer alone in silence because their child has been diagnosed with Pediatric Cancer. Our goals are to Support, Educate and Cure …. there just has to be a better way to treat our babies and we are stepping forward with our community of friends, family, neighbors, co-workers, and even strangers to make a difference.

Truly, I believe we are all placed on a certain journey in life. Which paths we take on that journey are our choices. I have chosen to NOT put the Cancer world behind us. Our family cannot just move on and turn our backs on those in the trenches. We have been blessed with great support and that combined with extreme luck to this point has made it a necessity (for me)  that we continue on in the fight. I am so proud of my family for agreeing to do this and joining me in giving  back and paying  it forward.

I will post more information about our upcoming fundraisers and donation information as we get our website up and running. We are being “sponsored” by the Carolinas Healthcare Foundation who have already started accepting donations. If anyone feels so inclined to donate before our fundraising efforts officially begin, please feel free!!! You can send a check made out to “Carolinas HealthCare Foundation” to CHF, 1221 E. Morehead, Charlotte, NC, 28204 and simply note “Julia’s Rainbow Fund” in the memo section of the check. I am so over the moon over this and it feels so good to feel so good!!

One of the major efforts we hope to fund is the amazing Oncology Research going on at Levine Children’s Hospital. This week we were fortunate to be involved and included in an extremely important press conference concerning the move to be able to participate in Phase 1 and 2 trials for leukemia and neuroblastoma. This link explains it and shows some brief footage of Julia and I being interviewed … pay no attention to my very bad hair day!

http://www.wsoctv.com/news/22645151/detail.html

It was a crazy morning of interviews and radio shows …. Too much fun passing out pancakes for IHOP’s National Pancake Day for Children’s Miracle Network Hospitals but we are all paying the price now. Julia and I have the croupy cough nastiness that is going on and ironically so do each of the Morning DJ’s we spoke to ! Yikes! Sorry Jen and Brotha’ Fred. Guess they won’t forget us anytime soon.

So I tried to catch you up as quickly as possible with the highlights yet I am sorry if this got a bit winded! I will be blogging more frequently to keep in touch so it should be shorter and sweeter (maybe?) from now on!!!

Have a great night and day!

Peace,

Kathy