The Story of a two year old and Acute Myeloid Leukemia M7! For those of you who have happened upon this blog by chance today I hope that this particular post can give you an overview of the roughly 300 posts on this blog. I have added hyperlinks all over so that you can navigate your way to the monumental moments in Erin's story.
I started this blog June 2, 2010, the day after we found out that our 23 month old Erin was diagnosed with AMLeukemia. I had never blogged before. It started out as a way to communicate to our friends how Erin was doing and a way to keep track of what our family was going through. When Erin was diagnosed we had 3 children; ages 4, 3, and our almost 2 years old Erin. I hope that this blog can be used in the future as an uplifting glimmer of hope for others out there who are going through similar trials.
"...the dial on the wheel of sorrow eventually points to each of us. At one time or another, everyone must experience sorrow. No one is exempt . . . Learning to endure times of disappointment, suffering, and sorrow is part of our on-the-job training. These experiences, while often difficult to bear at the time, are precisely the kinds of experiences that stretch our understanding, build our character, and increase our compassion for others . . . The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude." - Joseph B. Wirthlin, "Come What May, And Love It"
I was standing in a check-out line at Walmart with a cart full of groceries gearing up for a trip to Bear Lake on the afternoon of June 1, 2010 when I got a phone call from my husband stating that our Pediatrician was certain that our precious 23 month old had leukemia and we were to go directly to Primary Children's Medical Center in Salt Lake City, Utah. I didn't even know what leukemia was. I hung up the phone and wished that I could disappear and turn back time. You can read about that experience HERE. There are so many painful emotions that come from those first few days. I still don't want to think about it.
The next day, after many tests and waiting, we found out that Erin had Acute Myeloid Leukemia. Did you know that there are different types of leukemia? I didn't. I had a lot of questions, but we didn't have time for answers. Things went so fast that the surgery techs arrived in our room to take Erin to surgery to place a broviac central line (picture of that HERE) in her chest before we even found out what kind of leukemia she had. The surgery people left, we talked to an Oncologist and he gave us the grim news that Erin had a tougher more resistant hard to cure type of leukemia. Erin was then whisked down to surgery, sedated to limpness in our arms, taken away, and we were left in the busy hallway bawling with broken hearts.
Erin's treatments consisted of five intense rounds of chemotherapy that wiped her immune system to zero for 79 days. Because her immune system was non-existent we were told that AML treatments lasted 6 or more months and all her treatment would be done while she lived in the Immunocompromised Unit of Primary Children's. Overall, she endured intense nausea, multiple red blood and platelet transfusions, dangerously high fevers, diarrhea, bacterial infections, a cellulitis sore that turned into chronic inflammation and scar tissue, rashes, biopsy's, nodes on her lungs, echo-cardiograms, CT scans, bone marrow aspirates, lumbar punctures, MRIs, and multiple central line repairs.
She survived 146 days and nights spent in isolation at Primary Children's Medical Center over a period of 7 1/2 months.
You can read about Round #1 HERE. About when her hair started to fall out HERE. About celebrating her 2nd birthday in the hospital HERE. You can read about some of the blessings we felt at the beginning of our experience HERE and you can see pictures of her first time outside after spending 29 days couped up in a room at the hospital HERE.
You can read about Round #2 HERE as well as a little adventure on getting to this round HERE. You can read about two ships passing in the night HERE. You can read about the Ronald McDonald House HERE. You can read about the many emotions cancer brought me HERE.
You can read about Round #3 HERE. Erin's hospital bills have totaled nearly a million dollars and you can read about the importance of insurance HERE. You can read about a special anniversary surprise that was such a wonderful gift from so many people HERE and see some sweet pictures of Erin playing in the hospital HERE. You can read about Erin's simple faith and her prayer before going to bed HERE. You can read about Medications and working her medication pumps 16 times a day as we took care of Erin while she was home HERE.
You can read about Round #4 HERE and HERE. You can see a video I put together about our Leukemia Society Light the Night Experience HERE. You can read about what ANC means HERE.
You can read about Round #5 HERE and HERE as it was a two-part round. You can see a video on her last chemo day HERE. You can read a post on a special experience we had on dealing with the knowledge that 50% of kids with AML will relapse HERE. You can read about giving blood and the miracle of bone marrow HERE and HERE. You can read about our surprise tree at the Festival of Trees HERE and when they delivered the tree to our home HERE.
You can see a video of Erin ringing the bell signaling the end of her cancer treatment HERE. You can see a sum up of all the procedures and pharmaceuticals Erin endured HERE. You can read about our very last night in the hospital HERE. You can see a video of me flushing her central line the last time HERE and pictures of her getting her tube-ees out HERE.
You can see a complete sum-up video of Erin's cancer story HERE.
You can read about Erin's Make-A-Wish experiences HERE and HERE.
Thank you so much for checking in on us and reading about our experiences. We have truly felt blessed throughout this trial. We are grateful to the many people who helped us survive and we are extremely thankful for our Savior and his love that got us through the darkest of times.
Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"
Monday, March 28, 2011
Friday, March 25, 2011
Cancer's Roller Coaster
Our dear friends, the Smith's, who live here in Cache Valley have a 19 year old son who has AMLeukemia like Erin did. This is his second kind of cancer that he has had to fight. Tanner was set to have a bone marrow transplant in April, but they just got news that his Leukemia is still growing and they found 13% in his blood. He needs to have something around less than 5% or maybe it's 0% (can't remember) in his blood before he can have his transplant. This is hard news. Please pray for them.
Two of our cancer friends went to D.C. last week with CureSearch to advocate for childhood cancer. One of my favorite quotes from one of her speakers was this:
"We are curing our children with drugs from the 50's, 60's, and 70's. We have only improved our cure rates by giving more, not by discovering more. We push them to the brink. Most of them will experience toxicity at some point. This is unacceptable in the adult cancer world, why is it acceptable for children? Curing is not enough. They deserve a lifetime of health. They need new drugs that aren't as toxic. We have the tools for this, but we need the funding . . . How will history look back on this congress? By cutting back, our children will suffer."
You can read about her whole experience HERE. One of our friends put together a book of 30 of our cancer kids. We each wrote about our experiences and added pictures of our kids. She gave these books to Congress. I hope they read these true experiences and see the pictures of our kids and that they don't cut funding for childhood cancer.
We have so many friends who are doing well and so many who are struggling day to day. It is so unexpected how things are turning out. It's a roller coaster. Sometimes we're up and sometimes we're down. But, we keep riding. We keep fighting.
Two of our cancer friends went to D.C. last week with CureSearch to advocate for childhood cancer. One of my favorite quotes from one of her speakers was this:
"We are curing our children with drugs from the 50's, 60's, and 70's. We have only improved our cure rates by giving more, not by discovering more. We push them to the brink. Most of them will experience toxicity at some point. This is unacceptable in the adult cancer world, why is it acceptable for children? Curing is not enough. They deserve a lifetime of health. They need new drugs that aren't as toxic. We have the tools for this, but we need the funding . . . How will history look back on this congress? By cutting back, our children will suffer."
You can read about her whole experience HERE. One of our friends put together a book of 30 of our cancer kids. We each wrote about our experiences and added pictures of our kids. She gave these books to Congress. I hope they read these true experiences and see the pictures of our kids and that they don't cut funding for childhood cancer.
We have so many friends who are doing well and so many who are struggling day to day. It is so unexpected how things are turning out. It's a roller coaster. Sometimes we're up and sometimes we're down. But, we keep riding. We keep fighting.
3 Month Clinic
John, Erin and I went to Primary Children's for Erin's 3 month clinic check-up. As always, I get all nervous about going, but overall it was a wonderful experience. Erin knows the routine really well now. She was very excited to be at the hospital again and she tap danced down the hallway - she loves her new little sandals and the tapping noise they make. We first went to the Lab to get her blood drawn. She sat so calmly when the poked the top of her hand and inserted a needle, she whimpered a bit as they drew the blood, but she never pulled her hand away. I think that is pretty amazing for a two year old!
She colored a pictured while we waited for our turn in the lab.
We got up to the fourth floor and we ran into none other than Elena and her family as they were leaving. They had been inpatient for 4 days while Elena got high doses of chemo to kill her ALLeukemia.
I first met the Hoffman's at the Light the Night done by the Leukemia Society, we have loved reading their uplifting blog.
This is the first time that Elena and Erin had met, yet they ran to each other and gave this BIG hug upon first meeting. I think these little cancer kids can feel each other special spirits since they have gone through so much.
We had a little get-together in the hallway!
Left-Right: Briana, Lizzie, Rachel, and Me.
It was so fun to run into our cancer friends.
Briana was leaving the hospital, Lizzie was staying with her baby Andrew who has AML and just started the 35 day stay for round #4 of chemo. Rachel was just arriving and bring her baby in for his bone marrow aspirate and getting ready to start his bone marrow transplant. I LOVE these women! They have comforted me, we have talked and laughed together, we have mourned each other's burdens. It is wonderful to have such a great support group amongst these and many other Moms! I was so sad we couldn't go into ICS and see many of our other friends. They have restictions on kid visitors right now since it's still flu season.
Elena and Erin riding down the hallway together!
We then made our way to the Hematology/Oncology Clinic.
Erin and I read several books while we waited to see her Doc.
We waited for an hour in our room.
The Hem/Onc Clinic is always so busy with so many cancer kids.
We blew lots of bubbles!
Erin saw Dr. Verma and Dr. Fluchel. They are so happy that she is doing so well. Her sore on her bottom is nearly healed. The lymph node in her hip is less swollen and her sore is so much softer and less inflamed. She has had this sore for 5 months and I think it is actually starting to go away. For good. Dr. Fluchel brought in two medical students to meet Erin, he said that she is the cutest of all his patients. Of course, he probably says this to everyone, but Erin loves the attention though. He told them about some of her complications from the chemo. I'm sure it's a sobering and good learning experience for these medical students. I really love that Erin has such good care and that she is being treated by a University Hospital.
All done and her usual red Popsicle.
They have to go get a special Popsicle for Erin every time we are here.
In Erin's mind: Hospital = Popsicles.
We have officially stopped the Septra (anti-pneumonia) she was on.
Erin's blood work is looking really good.
We are very thankful that she is doing so well.
Labs from 3 Month Clinic
White Blood Count 4.8 (normal 6.0-17.0)
Hematocrit 41.98 (normal 34.0-40.0)
Platelets 208 (normal 150-400)
ANC 2300 (normal 1500-8500)
Previous Labs from 2 Month Clinic
White Blood Count 4.7
Hematocrit 38.6
Platelets 202
ANC 2200
Monday, March 21, 2011
Kicking Out Cancer!
Things are good. I sometimes feel guilty that things are so good with Erin when I read the blogs by my cancer friends whose kids are just so sick. This new world of cancer is such an unexpected roller coaster. My heart aches from the hardships of my friends and their kids.
Erin is really doing well. Her hair is growing, she has so much energy, and she is vibrant and happy. Her body is bouncing back from the near death the chemo brought upon her bone marrow. She gets tired now and then, and she has had a runny nose since she came home at Christmas, but those are such small things to even complain about. I have been soaking Erin in a tub a few times a day and her sore is seriously softer and much less inflamed.
She naps two or more hours a day which I'm sure is helping her little body continue to heal. She is my only child who has napped until almost age 3. She comes to me each day around the same time and says, "I'm tired mom, can I have a nap." Wow! That one always surprises me because I had to be really creative to get her siblings down for a nap when they were little.
Saturday night I tucked her into bed and whispered to her that tomorrow would be Sunday and that we would go to church in the morning. She yelled, "oh church, yeah!" She loves going to church and seeing our wonderful neighbors, and playing in the nursery. She missed going to church while she was in the hospital. She really did miss it. I couldn't believe that when she was home and better that she would even remember church, but she did. It is such a blessing that her spirit remembered that peaceful feeling that comes with going to church.
We have been having emotional ups and downs since being home and being done with cancer. It's been an adjustment. We lived on adrenaline and tears for so long and our bodies/minds/spirits our still adjusting to normal life. When our social worker talked to us about being home she warned us about depression and how things would feel being home again. Cancer leaves a big wake. It attacks everything, even after it's been killed!
This last week I decided to kick cancer (and all it's shadows) out of the house. I cleaned every room in our house. I cleaned cupboards and boxes out in an attempt to simplify and bring some peace to our surroundings. It all feels so much better. We lived in such disarray for so long while rushing to and fro from hospital and home that things sort of got into a shambles. I sold what we could at a garage sale on Saturday and then we gave everything else to Desert Industries. Having that big project and something to look forward to really brightened my spirits and kept my mind off of cancer.
Thursday I take Erin to the Oncology Clinic at Primary Children's for her 3 month check-up. I always get anxious about these monthly appointments. I wish I didn't, but I do and probably will always be anxious until we hit the magical 5 year mark when she'll be declared cured!
One big milestone coming up!!! Erin gets her LAST DOSE of Septra (anti-pneumonia), "the pink stuff" as she likes to call it, on Tuesday night. Of course, that is all pending on her blood counts on Thursday. But, I'm pretty positive she'll be taken off of it. Oh wow, that reminds me that I NEVER gave her this mornings dose and I've been so faithful giving it to her for the last 10 months. Whoops. Septra is the only medication she is on. She will be medication free tomorrow night! I think we'll have a party!
Thank you so much for your continual prayers, kind words, hugs, notes, and thoughts for our family. We feel so greatly blessed to be so healthy right now. We feel so blessed to have conquered our latest trials. We can truly feel the Lord's hand in our lives. He loves us so much.
Erin is really doing well. Her hair is growing, she has so much energy, and she is vibrant and happy. Her body is bouncing back from the near death the chemo brought upon her bone marrow. She gets tired now and then, and she has had a runny nose since she came home at Christmas, but those are such small things to even complain about. I have been soaking Erin in a tub a few times a day and her sore is seriously softer and much less inflamed.
She naps two or more hours a day which I'm sure is helping her little body continue to heal. She is my only child who has napped until almost age 3. She comes to me each day around the same time and says, "I'm tired mom, can I have a nap." Wow! That one always surprises me because I had to be really creative to get her siblings down for a nap when they were little.
Saturday night I tucked her into bed and whispered to her that tomorrow would be Sunday and that we would go to church in the morning. She yelled, "oh church, yeah!" She loves going to church and seeing our wonderful neighbors, and playing in the nursery. She missed going to church while she was in the hospital. She really did miss it. I couldn't believe that when she was home and better that she would even remember church, but she did. It is such a blessing that her spirit remembered that peaceful feeling that comes with going to church.
We have been having emotional ups and downs since being home and being done with cancer. It's been an adjustment. We lived on adrenaline and tears for so long and our bodies/minds/spirits our still adjusting to normal life. When our social worker talked to us about being home she warned us about depression and how things would feel being home again. Cancer leaves a big wake. It attacks everything, even after it's been killed!
This last week I decided to kick cancer (and all it's shadows) out of the house. I cleaned every room in our house. I cleaned cupboards and boxes out in an attempt to simplify and bring some peace to our surroundings. It all feels so much better. We lived in such disarray for so long while rushing to and fro from hospital and home that things sort of got into a shambles. I sold what we could at a garage sale on Saturday and then we gave everything else to Desert Industries. Having that big project and something to look forward to really brightened my spirits and kept my mind off of cancer.
Thursday I take Erin to the Oncology Clinic at Primary Children's for her 3 month check-up. I always get anxious about these monthly appointments. I wish I didn't, but I do and probably will always be anxious until we hit the magical 5 year mark when she'll be declared cured!
One big milestone coming up!!! Erin gets her LAST DOSE of Septra (anti-pneumonia), "the pink stuff" as she likes to call it, on Tuesday night. Of course, that is all pending on her blood counts on Thursday. But, I'm pretty positive she'll be taken off of it. Oh wow, that reminds me that I NEVER gave her this mornings dose and I've been so faithful giving it to her for the last 10 months. Whoops. Septra is the only medication she is on. She will be medication free tomorrow night! I think we'll have a party!
Thank you so much for your continual prayers, kind words, hugs, notes, and thoughts for our family. We feel so greatly blessed to be so healthy right now. We feel so blessed to have conquered our latest trials. We can truly feel the Lord's hand in our lives. He loves us so much.
Tuesday, March 15, 2011
A Fauxhawk
How to do the hair today?
How about a fauxhawk!
And of course, a monkey-face.
I only had two children today ask me if Erin was a boy or a girl. *grin*
A "fauxhawk" approximates the style of a mohawk without shaving the sides of the head. The fauxhawk is typically worn with a small but noticeable spike in the middle, though usually considerably shorter than many traditional mohawks. The style re-emerged in the early 2000s, with one of the popularly known wearers being David Beckham. The fauxhawk is known in the Hoxton and Shoreditch districts of London as the "Hoxton fin". (Thank you Wikipedia for this informative description)
Friday, March 11, 2011
The Miracle of Bone Marrow
Our little AML friend, 8 month old Aubree, received a bone marrow transplant yesterday from her 4 year old brother. You can see tons of pictures of the process HERE. If Aubree hadn't received a bone marrow transplant her survival rate would have been only 10%. Thanks to the bone marrow from her brother she now has a 90% survival rate! Isn't that amazing?!
Last week John and I finally joined the bone marrow registry. Today I received my bone marrow registration packet in the mail. I had to swab my cheek 4 times and then I put it in the mail. Now I sit and wait to be someone's match and hopefully save their life. Maybe I'll never match anyone or maybe I'll be someone's ONLY match!
On April 6th our friend Tanner is getting a bone marrow transplant. They were able to find a 10/10 match through the bone marrow registry and it is saving his life. This is the second time Tanner has had cancer and he is such an amazing example of strength for us all.
It's such an easy process to join the registry AND it was free. You could be someone's ONLY match. After I sealed my envelope with my cheek swabs in it I started crying and hoping that I can help save someone else's life. I really felt like I did something important today. It is such a miracle that so many of our cancer friends are making it. It is a miracle that Erin is home and well with us.
If Erin's leukemia were to relapse then our next step would be a bone marrow transplant. We would be searching through those 2 million names of people who have already joined and pray hard that we could find a perfect match. Please consider joining today.
You can join the registry if you are age 18 to 60. Just about anyone can join! Those who cannot join are those who have AIDS, cancer, herniated disc or spine fracture/rods in your back, had hepatitis B or C, serious or chronic kidney problems, liver disease, organ or tissue transplant, active Tuberculosis, and if your BMI is extremely low or extremely high.
A bone marrow donation can either (1) be taken from your hip while you are sedated or (2) like when you give plasma through a needle in your arm or (3) cord blood from a newborn.
Last week John and I finally joined the bone marrow registry. Today I received my bone marrow registration packet in the mail. I had to swab my cheek 4 times and then I put it in the mail. Now I sit and wait to be someone's match and hopefully save their life. Maybe I'll never match anyone or maybe I'll be someone's ONLY match!
On April 6th our friend Tanner is getting a bone marrow transplant. They were able to find a 10/10 match through the bone marrow registry and it is saving his life. This is the second time Tanner has had cancer and he is such an amazing example of strength for us all.
It's such an easy process to join the registry AND it was free. You could be someone's ONLY match. After I sealed my envelope with my cheek swabs in it I started crying and hoping that I can help save someone else's life. I really felt like I did something important today. It is such a miracle that so many of our cancer friends are making it. It is a miracle that Erin is home and well with us.
If Erin's leukemia were to relapse then our next step would be a bone marrow transplant. We would be searching through those 2 million names of people who have already joined and pray hard that we could find a perfect match. Please consider joining today.
You can join the registry if you are age 18 to 60. Just about anyone can join! Those who cannot join are those who have AIDS, cancer, herniated disc or spine fracture/rods in your back, had hepatitis B or C, serious or chronic kidney problems, liver disease, organ or tissue transplant, active Tuberculosis, and if your BMI is extremely low or extremely high.
A bone marrow donation can either (1) be taken from your hip while you are sedated or (2) like when you give plasma through a needle in your arm or (3) cord blood from a newborn.
Make-A-Wish Sky View High School CAUSE WEEK!
We are so THANKFUL for Sky View High School for all that they have been doing for our family this week. The Sky View High School student body officers visited the Wishing House in Murray a few weeks ago and choose to help sponsor Erin's Make-A-Wish trip to Disneyworld.
Last week we got a special visit from Belle, Cinderella and a few Prince Charmings.
They came to meet Erin and get some pictures and video with her.
Belle read the Rapunzel story to the kiddos.
And Cinderella gave a glass slipper to Princess Air Bear.
This week Sky View High School has been holding their
CAUSE WEEK!
They have been fundraising all week long
for Erin's Make-a-Wish Trip!
I was so impressed with their enthusiasm and creativity for fundraising!
On Monday they had an assembly where they showed a movie that they had made from their trip to the Wishing House and from the footage they took while they were visiting Erin at our house.
They sold bracelets, they sold make-a-wish stars that are hanging from the ceiling at Sky View, and they held a blood drive in honor of Erin. One day they stood at the entrance to the parking lot at school and got change from everyone's cars as they left - they made over $300 just from the change! Tonight they are holding a drive-in movie and last night they had an activity at The Fun Park, where 30% of proceeds went towards Erin's wish.
Last night they invited our family to the Fun Park activity. We were there for 3 hours and the kids had seriously the best time of their lives AND we got to thank so many of the kids responsible for this kindness!
The family in the Soft Play.
Bowling!
I scored THREE STRIKES in a row!!!
I just wished they'd all been on my game
so I could have beat John's score.
(one of them I scored on Erin's game)
We met TONS of awesome new friends at every turn!
Erin was laughing so hard in the one below!
We ate pizza and pop and watched some of our friends skate around the rink.
Near the end of the night the kids went back to the soft play with some of the guys.
They chased each other all over the place and zoomed down the big slide.
The kids SERIOUSLY HAD A BLAST!
We had the most magical night as a family. When we came home I was just overwhelmed at how much fun we had all together. I don't think our family has had that much fun together since before Erin's cancer! I was overwhelmed by the generosity of a huge group of high school kids. They have given us so much too look forward to, they have lightened our burden, and they have touched our hearts.
THANK YOU SKY VIEW!
Monday, March 7, 2011
The Single Greatest Difficulty
The other night I filled out a questionnaire for a research project being done by one of our Oncologists at Primary Children's. The research is being conducted on "factors contributing to the burden of childhood cancer treatment on patients and their families". There was one question within the questionnaire that has just been weighing heavily on my mind ever since. It reads:
Please indicate which one of the following is the SINGLE GREATEST DIFFICULTY you have faced as a caregiver for a child with cancer. (please check only one to complete the sentence below)
"The single greatest difficulty about being a caregiver for a child with cancer is that . . ."
1. Creates financial burden
2. Doesn't leave enough time for myself
3. Doesn't leave enough time for my family
4. Interferes with my work
5. Creates Stress
6. Creates or aggravates health problems
7. Affects our family relationships
8. Other difficulty (please list): __________
9. No difficulty
As we have been home and off treatment for 3 months now we are still feeling the scars that cancer has left upon all of us. There is not one single great difficulty about cancer. It changes everything. Everything.
Cancer tears your world apart as you desperately try to keep everything into place.
Erin beat cancer. We are through. But, we will never be the old normal again. This is to be expected. We are grateful for what we learned from our trial. The blessings and miracles we witnessed have been special experiences we will forever keep within our hearts.
Erin still prays every night, "no more tube-ees, no more hospital." Today as I was giving her a bath she told me that she didn't have any more tube-ees or stickers so she can take a bath and get all wet Cecily prays every night, "please bless all the people we know and don't know who are sick." The last few nights she has added, "thank you that Erin has no more leukemia and please keep it from coming back."
Sometimes I wonder why both of my girls are still praying and talking about leukemia and cancer on a daily basis. John and I try so hard to not think about it. But, it's like a really bad dream that is sort of stuck in the back of our minds.
There are days when I look at Erin and am just so overwhelmed by the amazing miracle it is to have her healthy and running around our home. It's like starting a whole new life with her as a healthy child. It's wonderful.
There are also times where I worry about her cancer coming back. I'll probably worry about that for a long time. Sometimes I think about how crazy my thoughts are. This is what my mind went through today: I found bruises on her legs, arm, and face and seeing those bruises just brings a gush of worry into my mind. I think about getting into the car and driving her to a lab to have her blood checked. I think that her next Oncology appointment on the 24th is just too far away to wait. I think about what I would do if her cancer comes back. I think about how I'm going to juggle our family around while we live at the hospital and how in the world we would survive her going through a bone marrow transplant. I hold her carefully and cuddle her longer than I did yesterday. I meticulously look at her skin and wonder if the leukemia is taking over her blood again. Then, I find a bruise on my own forearm and wonder if maybe I have leukemia too. Then Cecily tells me that her feet hurt and I worry that some type of cancer is growing in her too.
I really hate that cancer has made me think this way. It bugs me. It's absolutely ridiculous because my mind is just running away with it all. I know that most likely her cancer isn't coming back, but still the worry is just stuck there. That 50% of kids that relapse just kills me. I wish we knew which 50% we were in.
These are my real thoughts. I know that I am not the only one out there who is crazy like this. It is part of the difficulties that come with cancer. Cancer not only affects the person with the cancer, but the whole family.
So going back to the "single greatest difficulty" question: I wanted to check every answer in the research questionnaire, not just one. I wanted to circle and underline each difficulty in red so that they know that there isn't just ONE difficulty.
I'm sure you're wondering what answer I did put. In the end (after debating it out with John) we marked "creates stress". Becuase well, it did create a lot of stress.
Please indicate which one of the following is the SINGLE GREATEST DIFFICULTY you have faced as a caregiver for a child with cancer. (please check only one to complete the sentence below)
"The single greatest difficulty about being a caregiver for a child with cancer is that . . ."
1. Creates financial burden
2. Doesn't leave enough time for myself
3. Doesn't leave enough time for my family
4. Interferes with my work
5. Creates Stress
6. Creates or aggravates health problems
7. Affects our family relationships
8. Other difficulty (please list): __________
9. No difficulty
As we have been home and off treatment for 3 months now we are still feeling the scars that cancer has left upon all of us. There is not one single great difficulty about cancer. It changes everything. Everything.
Cancer tears your world apart as you desperately try to keep everything into place.
Erin beat cancer. We are through. But, we will never be the old normal again. This is to be expected. We are grateful for what we learned from our trial. The blessings and miracles we witnessed have been special experiences we will forever keep within our hearts.
Erin still prays every night, "no more tube-ees, no more hospital." Today as I was giving her a bath she told me that she didn't have any more tube-ees or stickers so she can take a bath and get all wet Cecily prays every night, "please bless all the people we know and don't know who are sick." The last few nights she has added, "thank you that Erin has no more leukemia and please keep it from coming back."
Sometimes I wonder why both of my girls are still praying and talking about leukemia and cancer on a daily basis. John and I try so hard to not think about it. But, it's like a really bad dream that is sort of stuck in the back of our minds.
There are days when I look at Erin and am just so overwhelmed by the amazing miracle it is to have her healthy and running around our home. It's like starting a whole new life with her as a healthy child. It's wonderful.
There are also times where I worry about her cancer coming back. I'll probably worry about that for a long time. Sometimes I think about how crazy my thoughts are. This is what my mind went through today: I found bruises on her legs, arm, and face and seeing those bruises just brings a gush of worry into my mind. I think about getting into the car and driving her to a lab to have her blood checked. I think that her next Oncology appointment on the 24th is just too far away to wait. I think about what I would do if her cancer comes back. I think about how I'm going to juggle our family around while we live at the hospital and how in the world we would survive her going through a bone marrow transplant. I hold her carefully and cuddle her longer than I did yesterday. I meticulously look at her skin and wonder if the leukemia is taking over her blood again. Then, I find a bruise on my own forearm and wonder if maybe I have leukemia too. Then Cecily tells me that her feet hurt and I worry that some type of cancer is growing in her too.
I really hate that cancer has made me think this way. It bugs me. It's absolutely ridiculous because my mind is just running away with it all. I know that most likely her cancer isn't coming back, but still the worry is just stuck there. That 50% of kids that relapse just kills me. I wish we knew which 50% we were in.
These are my real thoughts. I know that I am not the only one out there who is crazy like this. It is part of the difficulties that come with cancer. Cancer not only affects the person with the cancer, but the whole family.
So going back to the "single greatest difficulty" question: I wanted to check every answer in the research questionnaire, not just one. I wanted to circle and underline each difficulty in red so that they know that there isn't just ONE difficulty.
I'm sure you're wondering what answer I did put. In the end (after debating it out with John) we marked "creates stress". Becuase well, it did create a lot of stress.
On the flip side,
Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot depress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit
Thursday, March 3, 2011
Once I was . . .
The many looks of Little Air Bear.
Once I was a little cow.
One of the many fun dress-ups from the basement.
Once I was Rapunzel.
We got this little hair piece from my mom
and Erin thought it was pretty cool to have long Rapunzel hair!
Once I was a little boy.
Not really, but she looks like a little boy
in Caleb's old pajamas
and with her hair growing in the way it is.
Someday hopefully she'll laugh at this.
She is the cutest "little boy" around!
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