Thursday, April 29, 2010

"Mean Mom"

That's the name Kristen chose for me today. Can't say that I blame her. I drug her out of her cozy surroundings this morning out into a spring snow storm without any breakfast, not even a drink. You know the drill, nothing solid after midnight, clear liquids until 9am all a prep for her noon lumbar puncture.  We made a quick stop in the clinic for labs and anti-nausia meds. The labs showed that her kidneys were doing better than last week. Hooray! They will be checked again in a week. In 2 weeks Kristen will have another lumbar puncture and also a bone marrow biopsy. Tests will be done to determine the DNA in her marrow and of course we are hoping it is her brothers marrow and not hers. We already know what her bone marrow wants to do, make leukemia cells. So hopefully it will show 100%  her brothers DNA. We are planning on this being her LAST lumbar puncture and her LAST bone marrow biopsy.  Ever.
Once we arrived home today, Kristen headed back to her favorite place. It was only appropriate that the little princess was served dinner in bed.

Dinner was followed with a dose of tylenol to ease the pain in her back and as of late
she is snug as a bug in a rug. I think I will join her.

Monday, April 26, 2010

The sun will come out tomorrow.

An update on our little rockstar.
Her blood tests show that her kidneys are suffering due to the bone marrow transplant and also the medication she is on. A few adjustments on medication were made and levels will be checked again on Thursday. She continues to be on IV fluids and some IV medication for 14 hours a day. I start her at 7pm and run until 9am. Kristen's birthday is a week from today. I hope she has enough of a white count to go to lunch and a movie if she wants to. We'll go early and avoid crowds. She loves her birthday so hopefully the chemo she will receive this Thursday won't set her back.
We are hoping for an uneventful week.
Our hearts and prayers continue to be with Joany.




I feel like I have been stuck in a day that is gray for about 3 days now. This past week two more of our precious friends passed away, both children. I keep asking myself how I ever arrived here. This place or circle of friends where children dying are a part of our every day. With that being said, I need to say that although some might think this is a bad place to be, I have found this a magical place. Not the part about the friends leaving a vacancy in our hearts, but the magical part of family, friends, neighbors and even strangers being drawn together for the sake of a child. My new circle of friends are firm in the fire, they do not flinch, they go forward with faith and hope. Rather it’s the child or their sweet mother or father they continue forward unwrapping and peeling back the layers of unnecessary stuff that keeps them from moving forward. My new circle of friends support each other; they are continually stretching and reaching as they face life changing and heart wrenching moments every day. Many of my friends have hearts that harbor deep sorrow. They are faced each day with fears that trouble the soul. Yet they still continue to move forward even in the most desperate situations. Here in my new circle their is always something to marvel about. There is beauty and ingenuity around every corner. We all have our problems and we have them aplenty. At times when I have felt discouraged, spent or my faith is lacking it has been my family and my circle of friends that carry with them the things I lack, and they are so willing to share with me and build me up. As we continue down the path and are faced with steep hills, rough spots and mud puddles, I find comfort in knowing that someone is always right there to take my hand and show me the way.
My friends have uncovered courage, they live it, they breathe it and they share it.
I love where I am today, in this very moment.



Friday, April 23, 2010

Life is Precious

Today we received word that sweet Carly passed away very unexpectedly. We are all still waiting to hear the details as this came on suddenly. Carly was in school just yesterday. She was diagnosed with leukemia at the age of 2.  Her mother, Joany, has been such a support to so many of us. She always offers a kind word and wise advice. We have all grown to love both Carly and Joany. Cute little Carly came to this world and brought with her many charms to brighten the lives of all those whom she crossed paths with. This past December, shortly after Kristen relapsed, we received a very large package. It was from Joany and Carly. It was filled with many gifts, each one individually wrapped. This truly brightened Kristen's day. It proved to me that true love and friendship exist.We were honored to send Carly a Birthday gift for her 8th birthday this past January. Here are the pictures of her opening the gift.

Thank You Joany for sharing Carly and allowing her to be part of our life.
It seems odd as I keep checking Joany's blog for an update, tears streaming down my cheeks, I see the headline from her last post,
"Everything's going to be alright."

Saturday, April 17, 2010

Finally back to 98.7

 Yesterday was not a good day for Kristen. She was curled up in a cozy ball for most of the day. I checked her temperature throughout the day and every time I would check it was up a little. It started at 99.6 then 99.8 and finally topped at 100.2. Might not seem like a big deal except for Kristen if it reaches 100.5 we are back in the hospital. When the cancer kids have low counts things change fast. One minute they are fine and the next minute they are very sick. Me, being the over obsessive, looking for the storm kind of mom, I kept touching her head all night just making sure she wasn't hot. I was surprised to wake up and the first thing did was say and do the sign for "sausage muffin." I immediately felt her head and it was as cool as a cucumber and the thermometer verified 98.7. Just the fact that she was asking for food was a GREAT sign. Today should be a much better day.
Yesterday was a big mail day for Kristen. She received several cards and even a package
from a new friend named Sara who lives in Texas.
She sent an apron a cook book and a lot of other fun things that
 Kristen loves. As you can see she really does open every card
 and letter and has me read them to her.
She loves them. Thank You!


One more thing, Any ideas on what I can do with all of these...
Our hens are laying 7 eggs a day. I have no more room in the fridge and what
will I ever do with all these eggs?

Thursday, April 15, 2010

Stop seeking out the storms and enjoy more fully the sunlight.


Some days are just more difficult than others. I am not one to go spilling my emotions on the floor. But some days things just get to you. We spent the first half of our day in the bone marrow clinic. Kristen had her weekly blood check and her bi-monthly lumbar puncture. She really does not like being put under with the anesthesia. Once she awakes it takes a while for her to get her footing back. By the time we get home her back is getting sore. I just ran tylenol up to her as she is already back in bed. She headed straight up to her room as soon as we got home. Next up...the sickness associated with the chemo that was put in her spine today. It could be a long weekend, and the best part...my family is planning a little trip... without us.  Don't get me wrong here, I am not complaining because we are home. Kristen and I love being home. I am so happy to be home that if I could do a decent cartwheel I would just run outside right now and do several across the lawn.
I had a meeting at my sons school this morning. We were going over a few things and setting goals. The vice principal came in and the teacher introduced me to her. She continued to tell her the story about my daughter fighting leukemia for the past year and a half, that my son has missed his fair share of school because of his sisters illness. She then continued and said that he has not been feeling well lately that he has had some stomach issues and that she was sure that they were related to the issues going on in our family and that my son has been taking his sisters illness very hard and it is affecting his school work. I sat there in a daze and suddenly I was taken back to a movie I had recently seen. "My Sister's Keeper" The mother is the movie was so involved in saving her daughters  life and fighting her cancer that she failed to even notice that her older son had a learning disability as well as some other issues. I thought to myself, Have I become so involved in caring for and saving Kristen that I have slipped with my other children? For the better part of the day I have thought about that. I finally came to the conclusion that I really needed to stop looking for the storms. If I look hard enough I will definitely find some. My son is fine. He actually gained some independence and responsibility that any 16 year old could use.
  Now I better run as I have a cartwheel to perfect quick... before the sun goes down.

Tuesday, April 13, 2010

Time flies when you're having fun.

It must be true. Cause we are having fun and another week has already passed.
Kristen and I are still hanging out at home and loving it.
With the passing of another week, we are right back at the part where we go back to the bone marrow clinic and this time Kristen is due for another spinal tap.
She just got feeling better from the last one and it’s already time to knock her down again.

Kristen in still on some IV drugs and fluids that run for 10 hours every night. This morning I had to take my son to school, so I asked one of my daughters to lay with Kristen and listen for her IV pump to beep. I gave her quick instructions and then ran out the door. I returned 15 minutes later and heard Kristen dancing around up in her room. I thought that’s weird, I hope she has her fluid and pump in her hand. I ran upstairs to find Kristen free of the IV pump and my other daughter sound asleep.
Seems Kristen took the liberty of freeing herself from the IV pump all by herself.
Not a good thing as there is already a high risk for infection and her line could clot.
At least Kristen was very proud of herself and happily said, I did it!

Thursday, April 8, 2010

Lazy days

Kristen has had a lazy week. I was starting to think something was up with her, then I realized it was probably the chemo she had in her spinal fluid last Friday. She will have another blood test in the clinic tomorrow morning. For some reason she isn't absorbing some of the
anti-rejection drugs the way she should. So that will have to be addressed tomorrow.
Every morning she comes down to the family room and wraps up in her blanket,
I told her she looked like a burrito...
She didn't think I was funny.

Do I dare say that life is feeling good? That we might actually be getting some normalcy back?
It is true that Kristen has a long way to go yet. She is still limited as to what she can and can't do. First of all she doesn't feel like doing anything which is actually good, cause home is where she needs to be for now. We need to get these first 100 days behind us and then we will better know how she is really doing. There will be a test on about day 100 that will tell us whose bone marrow is making a come back. Of course we are hoping for 100% donor.
As far as the whole life getting back to normal...Yes!
I get to go to my sons baseball game tomorrow.  If I have learned anything over the past year and a half I have sure learned it is the simple things that really matter.  
Things like sleeping in your own bed,
making breakfast for your kids before they take off to school,
taking your kids to school,
folding a fresh load of laundry,
 or sitting on the floor with your grandkids and laughing your guts out cause
 Alvin and the Chipmunks are so dang funny.

Yes I have learned a lot.
I have also learned as I walk frequent the halls of the cancer unit that
there is much to do. No time to waste.
There are many things, simple things that can be done to
brighten the day of a sick child.
I have a friend in California who also has a daughter that had leukemia.
She could no longer sit.
She started a project called
A couple times a year she makes a drop at the Children's Hospital in LA.
Dropping off several blankets for the children there that are fighting cancer.
I had a little time and thought I could surely help. My daughters and I spent a few hours and made 4 blankets to contribute to the project.

Kristen loved the pink princess one so I guess I'm off to the fabric store to get some more fleece!





Sunday, April 4, 2010

Happy Easter!

This is how Kristen's morning started out. She was curled up in a ball sitting all snug in the chair. I was wondering what it was going to take to get her out of that chair to hunt for her Easter basket. Soon her sister came in and just picked her up and searching they went.  After finding her basket she was ready to get up and ready for the day. I was happy that she wanted to help with the eggs and the cookies. She had a fun day and went back up to her room in the early afternoon. Our family was all coming over so it was best for her to be up there away from all the people. I was thinking about last Easter how she had just finished her 8 months of chemo and was in remission. We were all very thankful that she had done so well and was finally home. Now this Easter, so much has happened in the last year and again we are thankful that she is home and doing well. Looking back at this past year it is hard to imagine that she relapsed, she endured more chemo, went back into remission and had a bone marrow transplant. We are at day +39, which is 39 days since transplant.
Kristen has again beat the odds and amazed us all.

Both of the great Grandmas had an egg hunt for my grandchildren.
We all had tons of fun!
And of course Rich had to let the bunny out to tease the kids.

Friday, April 2, 2010

A spinal tap, eggs, and a birthday

Kristen was supposed to have a spinal tap yesterday, but without knowing it, she decided to play an April fools joke on me. She was not to have anything to eat after midnight and just before we were to leave for the hospital I heard her say yummm. I turned around and she was crunching on a pretzel. I thought one little pretzel can't hurt, I decided to call the hospital just to make sure before I made the 30 minute drive, and of course it did matter. We re-scheduled the spinal tap for today. She did really well. Preliminary tests show the spinal fluid to look good and as of right now she is still in good spirits. The chemo they put in her spine is pretty nasty stuff so it's hard to say how she will re-act. I have kept her on tylenol as it can get pretty sore. She retreated up to her bed early today which means she was once again beat.
This pic of Kristen coloring eggs  is from last year. We had just come home from the hospital and we were  all finished with chemo. We had spent the last 8 months fighting leukemia. She had finished her treatments and was in remission but still fighting to get her strength back. I never would have thought that this Easter we are back at it. I only hope that tomorrow as we color our eggs Kristen can join us in the kitchen. But if not, we'll take hers up to her room. 
This little princess is my grandaughter, Brooke. She turned 5 today. My daughter said that every morning when she wakes up she says, "Is Kristen home from the hospital?" Luckily my daughter has been able to answer with a great big YES. Brooke then replies, "Please can we go see her today?" And of course the answer to that is also YES.
Happy Birthday Brooke!

Thursday, April 1, 2010

Spring?

Our precious friend, Jessenia, passed away just a few short days after she was given 3 to 4 months lo live. The infection in her lungs and the leukemia which was raging through her was just too much for her fragile little body. As her mother and I embraced at her viewing last night, it was difficult to understand and make any sense of her lifeless body lying next to us in her beautiful pink casket.

However, I am thankful that in the face of apparent tragedy, I can put my trust in God, knowing that my view is limited; I know that His purpose will not fail. With all the troubles that life offers us also comes tremendous privileges to grow in knowledge, wisdom, faith and works. I know that there is wisdom in trials that we might rise above them. We are given responsibilities that we might achieve, work to harden our muscles, sickness to learn patience, and sorrow to strengthen our souls.

As much as I hate cancer, I would be a fool to think that there has not been some lessons learned throughout this experience.
Through these trials my faith and patience have been strengthened. All that we suffer and all that we endure can build our character, purify our hearts, expands our souls, and make us more tender and charitable. I see these qualities in the children on the fourth floor, in Jessenia’s mother, Vicky and other parents that walk the halls. I, myself am still working on developing some of these traits.

We are off to the hospital today as Kristen is due for a spinal tap. She will receive chemo in her spinal fluid. She really hates these. They are usually followed by headaches and nausea.
We have some fun planned for Easter so hopefully she will recover quickly. I told my grandkids we would be hunting for eggs in the snow with one advantage, the bright colored eggs will be easy to spot against the white snow. After seeing what is going on in the New England area
I am not going to complain not even a little.