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Rather than spend time explaining what finally got me motivated to add something about the end of chemo, let me show you. These all came from the guestbook and this first entry is the one that served as a kick in the pants:
Our son Andrew is concluding his 2+ years of treatment for ALL.
Will you please when time came to the end of chemo? Thank you.
Marc received a call from Make a Wish and suprisingly he didn't chose to meet anyone, or a cruise, or a vacation. He chose therapy equipment to help him get back on his feet. If he could have one wish it would be to walk again.
Feeling withdrawn, having his best friend leave his side when time's got tough.
Is there anyone out there that has this diagnoses that is dealing with wheelchair assistance? Someone that can relate to what Marc's going through. Someone that he can talk to?
I was diagnosed with Burketts Lymphoma on December 28th 2002 and stayed in the hospital from that date until April of 2003. I was 209 lbs when I went in and 83 lbs when I got out. It didn't look too good, but now I am in remission. If anyone reads this and would like some kind of help with anything, I am here for you. This is a very hard thing for someone to go through as well as the family. I had an extreme case and was given six months to live; but it has been over a year now since I was diagnosed.
I went through so many spinal taps.. (Those things hurt) as well as bone marrow biopsies which are also very painful, and 17 blood transfusions.
The reason Im writting is to help whoever needs some help getting through this whole ordeal. Ive gained so much from my experiance... EMAIL ME at JayAnderson830@msn.com
Our son, Anthony, is finished with his transplant; he had AML and a rough time going into remission. By God's grace he did and after a long year of turmoil, he is being set free into his senior year of high school. I am scared to death, just like the rest of you but he fought very hard for his life and now deserves to live it to the fullest.
Yes, the unknown is worse than the known but faith in Jesus will get us through. God bless all of you and hold on, we will all get threw this, we will look back and be grateful for each day. I realize that the world is full of other dangers no different, any of us could get on a plane or in a car and have higher odds of danger than the ones or children have with cancer coming back. It won't be easy some days are hard others great, but if we think like a child and have the faith of a child we will succeed.
My son Josh is now 8 and by the wonderful grace of God he is alive today following childhood cancer twice and an autologous peripherial stem cell transplant. One can not imagine how such a child who appeared so healthy playing in the park one morning and diagnosed with cancer six hours later. Joshuah has taught his father and I more than anyone could imagine. I remember once while waiting for him to have surgery he began singing in the reception room of the hospital "Jesus Loves Me." No one knew how much he had gone thru and yet he felt safe. Although this has been the worst experience of our lives and long to go back to what all seemed normal it has taught us that we much enjoy our children and love them as if it's their last day. Nobody really ever knows.
I pray that one day we all can put the rememberence of the agony that our child has gone thru and take what we learned from the experience and put it all to good use. When I feel really down I realize what a wonderful blessing it is.
When Chris was going through treatment how I wished and prayed for this nightmare to be finally over and we could get back to being normal. Unfortunately no one explained that our perception of "normal" was a thing of the past. I was absolutely terrified on his being off treatment. Everything that happened to him...a headache, a pain in his leg, a new unexplained bruise I was calling the doctors. Although they told me this was very "normal," I felt like putting Chris in a bubble to protect him from everything. Being a teen he rebeled big time to this. Now 30 months later I still worry about him but not nearly as much. I find that our Cancer Kids enjoy life with a new zest that was not there before. I have been taught an important message from my son. "Enjoy each day like it was your last and don't stress the small stuff because it truly is small stuff when you have faced what Cancer Families have."
Having the 2 yr. battle behind us was all that kept me going after my 9 yr. old daughter Colleen was diagnosed with ALL(low-risk)Leukemia on Friday the 13th of November,1998. I honestly knew she was a fighter and could face the challenge and I knew she had a loving family(me, her Dad, two brothers and a sister) to help her with the fight. I joined hands with her (literally) and took on the fight with her,never leaving her side for the 2 yr. duration. We became one and I was so relieved when the 2 yr. mark was over and we could get on with our lives but never realized that her life had changed so much that she was unable to know how to 'get back to normal'.She was so compliant with the needles, shots, and medication schedules written out for us to follow. Coming off of chemo was like jumping from a plane with no directions of how to activate the parachute.Would the landing be safe? What would life be like after the landing? Too much uncertainty and no communication of what to expect.
Sam was dx with pleuropulmonary blastoma in oct 2000,& he has now been in remission for 2 years. Even after all this time I still worry everyday that the cancer will come back. People don't understand they look at him & see a normal, healthy, happy little boy. I look at him and see a little boy with cancer who is lucky enough to be well at the moment. I thought with time these feelings would go, but they haven't, they get better, but I don't know if they'll ever go away. Sara
I am so glad you have this section on your website. My son's treatment will end in Jan. 2003 and I was starting to think I was crazy. Since the beginning of this, I couldn't wait til treatment ended but now that's it's drawing near I am scared to death. I no longer know how to deal with life without clinic visit, chemo admission, bi-weekly blood counts and someone else helping me watch Scott for signs of cancer. What if I miss something? I have a feeling if Scott gets a pain anywhere he's going to be drug to the doctor's immediately and then I won't trust our local docs because they misdiagnosed Scott for six months. I'm glad to see these are normal emotions and I'm not crazy after all.
I cannot describe this feeling of being off treatment. I am feeling more anxious and fearful than when we began.
My David (he is now 3)was dx with Pleuropulmonary Blastoma December 2000. He just finished Chemo April 9th, 2002. A year and 4 months of it. Like everyone else I am terrified of recurrence. I have no idea of what normal is anymore. I wish those well-meaning people didn't say "now you can get back to normal" or say "so glad he is all better now". He will never be the same. I will always be wondering if it is going to come back. Cancer doesn't just walk in and out of your life. It is always looking over your shoulder. I, too, am scared that my "safety net" at the hospital and clinic has been pulled away. I feel so alone in this now. I am going to be the only one to keep track of all the little things going on with him. I know that everyone is going to think I am crazy for still being so scared and worried. Everyone else thinks he's "all better". They can not possibly know the fear going on inside of me. They can go on with their lives and not give it a second thought.
I'm scared that to many of you this will sound selfish..and I KNOW that my son's health and good prognosis is all that matters, but my 5 year old son was diagnosed with leukemia at 22 months. For his 2½ years of chemo, all of his energy was spent surviving. Now that he is off treatment, I have just realized how many important developmental milestones he missed during this time. I know deep down that his continued remission is the only thing that really matters, but sometimes it is so hard to see him struggle with the basic skills others his age perform so easily. I've got all the services available in place for him, but how do I learn to accept that the effects of cancer and it's treatment will continue to make his life more difficult forever? I truly hoped that after treatment we were close to the end of this nightmare...now I'm afraid it has just created others.
My 13 yr. old son, Brady, was DX with Burkitts on July 6, 2001. He had 5 months of very intense chemo. Most of that was spent in the hospital. He went from 105 down to 74lbs. He finished his treatments in November. He has gone back to school and rarely misses day. He has joined the track team even though he still gets tired real easy. He says he knows he probably will not win a race at the track meets, but it does'nt matter to him because he has already won the biggest race of his life—he beat CANCER!
Lorenzo has been out of treatment for a good 6 years now, he only goes in every 3 months still for CT, bone scans, onc. doc., blood work and once a year for kidney specialist.
I was feeling sort of OUT of the whole cancer family network, but this site is just what I need to understand my feelings and project them in a positive way.
You get so rushed into the CANCER life and then suddenly, you are out of it.
I'm not saying I miss it by any means, but it does become a way of life for so long that it's sort of like experiencing withdrawl??
Am I wrong for feeling like this? And do other paents feel like this after treatment??
I enjoy your site and plan on continuing to visit it every day.
Thanx again for providing exactly what I needed.
My six-year old son, Joey, was just starting to come to understand what leukemia was and why he had to take so many medicines and go to the doctor so often. When his 2½ year treatment period was over, he was afraid to stop taking the chemo because he might get sick again. We had to explain to him over and over again that the leukemia was gone and we didn't have to take that nasty medicine anymore. It is a big adjustment to make for both you and your child, but once you see that appetite returning and those rosy cheeks, you will know that all is well again!
Personally, I am so tired of well-meaning friends saying "now you can get back to normal." What is normal now???
Ahhh.....it's over. That's how I feel right now. I know there will be times in the future when I will get nervous looking at Wesley if he appears pale or has a few more bruises then usual, but I will not let this monster get the better of me. This is a joyous time and we will celebrate this victory and I refuse to look down a road that I don't want to travel. Will there be scary times to come with the anticipation of routine blood work or getting "normal" childhood illness—you bet. Will the questions come as Wesley gets older (he's 5) and he realizes that he just dodged a huge bullet? Probably. I am not anticipating the worst, but expecting the best. Leukemia has been a huge part of our lives for the past 2½ years. We will never forget it, but it will no longer rule us.
Wow, I'm so glad you added this page. My daughter's three years in remission now and my wife and I finally had to face up to something. For the longest time, we had dedicated all our time and attention to our daughter. Mostly because we were just so thankful to still have her, and we didn't ever want to waist another minute of her life. But one day just recently, we looked at each other and realised we hardly knew each other any more. After you're done with the fight, it's time to get back to your normal life, but your normal life isn't the same as it used to be. It's time to start a new normal life. When Katie first started her treatment, a nurse told us that 75% of all families in our situation will get divorced so we decided then and there that we were going to fight the cancer and not each other. But we didn't realize the hardest part was picking up our lives after the fight was over.
It was the greatest joy to be finally through the chemo and knowing that you made it through, but it was also the scariest time—I cried all the way home and it was a three-hour trip.
Not a day goes by that I am so scared that my daughter will get it again. We try to lead a normal healthy life, but it is always in the back of my mind.
Our son, Ben (dx in April, 2000 at the tender age of 2), received a bone marrow transplant in September for AML m7 that was in remission. Everything went smoothly and after 21 days we were released from the hospital having given Ben the ultimate treatment. He has been fantastic every since and we are stunned and amazed that he seems so "normal"! Given all of this, you wonder why life still feels so fragile and frightening? We have a long way to go (18 months) before Ben will be declared "cured." Clearly, a lot could still happen! Suddenly, I stumble over the fact that planning for Ben's future is probably not prudent (as in, "when Ben is 5, he'll be able to do.....). It was probably never prudent to dream away the present thinking about what might happen later, but we all do this from time to time as we imagine what our children might do with their lives. I am the luckiest mother on earth to be able to say that my child has successfully completed cancer treatment.
We are just getting to this point: tomorrow is Jacob's last radiation treatment, after dx 6/00 with DSRCT. It is so scary, not knowing if this will really be it, or if the monster will again rear it's ugly head. We have stayed strong throughout chemo, high-dose chemo and now radiation treatment, now I am afraid I might let myself cry. But no, I must stay strong and confident for my son and other children, too. Miracles do happen, and Jacob is one of them. The Lord will have to continue to carry this burdon, it is too big for my shoulders!
Wow! I wish someone had prepared me a little more! The normal life I craved while spending day after day at the hospital was no longer there AND the security of the hospital was no longer there in the same way.
I struggled for a while but I have slowly found a new "normal" to us. Not what everyone else percieves as normal. Our lives have been greatly enriched by the whole devastating experience, priorities change, insignificant "little" things before have now become so much more important.I don't whine about my chronic hay-fever any more. My son has been in remission now for 16 months and every day I look at him with a lump in my throat and think what might have been and so grateful for what is now—I still have my son!
I remember the pain and the anger I felt as if it was yesterday but at the same time I look at my son and as he is a glowing child, it sometimes seems like a dream.
The biggest down side is my fear of relapse, the not knowing, but I REFUSE to let cancer have the same control over our lives.
"A man cannot journey into a strange land and return unchanged."
A few words I came across, cant remember by whom.
Our son Jimmy was dx with ALL in Jan/98. He took his very last chemo medication on 3/30/01. We are only one month off treatment but already I feel as if a big weight has been lifted off our shoulders. I imagine I will worry if he gets a fever or sickness that doesn't leave as soon as I think it should but I am trying to take one day at a time as we have through this whole process. I can relate to Jennifer and wanting an emotional release. I think that parents are so busy taking care of their children when they're on treatment that you put aside all the innermost feelings thinking that if you let just a little out, you may have a total meltdown. That is how I felt. But now that treatment is complete, those old feelings are resurfacing and I am realizing that sooner or later I will have to deal with them. I am taking it as it comes and accepting it. Jimmy is doing wonderfully but I can't help but think that in some way all of what he has been through will catch up with him in some way. That may not be a bad thing because it may turn out
that he will receive some of the same blessings that we as his parents did
from all of this.
The blessings have been: not taking anything for granted,
cherishing those closest to you, and reaching out to help someone else in
need when maybe before we would have just passed by, feeling bad for their
situation but not wanting to get involved. We have grown in many wonderful
ways that I think are still surprising us.
WOW!! The things people never told me! The "normal" life I so much craved as I sat in the hospital day after day while my son was having treatment, no-one told me it didn't exist any more. I thought my life would be pretty much the same, how DUMB was I thinking that, but no-one told me.
When Cameron finished treatment I felt like we had been put out on the street and the door closed behind us, but it wasn't that it was the insecurity setting in, rather, we were no longer in the safety-net of the hospital with medical staff at our finger tips—scary stuff, no-one prepared me for that.
It takes time to mold yourself a new "normal" life and at times it is scarier now as everything hinges on a blood result. It's the never knowing; my greatest fear is relapse. When he was having treatment, relapse is something I didn't think of. No one prepared me for that. I didn't realize that the worst part wasn't only the treatment, it's the knife edge we walk day after day, always wondering.
We are all so very strong having to deal with all this so why didn't someone acknowledge that strength and tell me my life was NEVER going to be the same, I could have handled it!!
My daughter, Sophie, finished treatment for Non-Hodgkins Lymphoma in January, 2001. She had had intense chemo (all inpatient) for a period of 5 months. While she was in chemo, I was stressed, but I felt good knowing that the drugs she was getting were working. Now, I don't know, I don't trust her body. I look at her and wonder...is it starting again? will she get sick again? She got a cold with swollen lymph nodes in her neck and I almost lost my mind. Just thinking about checking her body for swollen lymph nodes sends me into a fear filled sweat. Right now, I really am having a hard time handling fear of relapse, and I worry that i share that will her a little. I suppose time is the only thing that will help. I try to believe she is cured and we will be lucky, but I am still terrified.
My daughter, Rebecca, was diagnosed with ALL on 3-15-98 and has been in remission since 5-18-00. She had a rough road to go down but what little kid didn't. I know what kept us going and never gave up was having faith in GOD, having friends, family, and wonderful doctors and nurses to help us through. Rebecca was so attached to her doctor just for seeing him so often. She was so sad when we didn't have to go back that much! I didn't realize how much of an impact a doctor could have on her. But I glad she feels this way about him. She goes for check-ups every 2 months now and they are still close. I just thank GOD everyday for everything he hands me to deal with because I know I can get thru it with his help.
My daughter, Victoria, finished treatment at Christmas and we celebrated New Year at Disney Florida!!! Victoria was diagnosed October 1998 with ALL and completed two years of treatment. She looks fantastic and is doing really well at school. She along with her 10-year old sister Alexandra are in a dance show soon to raise money for the ward at the Birmingham Children's Hospital where she received her treatment.
WHY then do I feel so low? I have been having panic attacks, I am suffering from a bad back, stiff neck, I am angry and snappy with everyone!! and I watch like a hawk every change in Victoria. Friends and family say STOP WORRYING!!! (and the consultant!!) Oh it sounds so simple!!!! while she was going through treatment I was so focussed on positive thinking and visualisation techniques to get her through it. Now there are no drugs, I feel total trepidation about lurking Leukaemia cells, feeling for glands, lumps in the neck and then checking her sisters neck to see if that is normal or n
This is post-traumatic stress and the books, leaflets should outline what physical responses the body has in such circumstances so you realise what is going on. As things are going well you want to be in the right frame of mind to enjoy the good times and not always dwell on WHAT IF!!!!
Family getting back to "normal" is also a stressful time.
At the time of diagnosis, two years of treatment seems a long road. But as you come off treatment, you sonder "where did those two years go?"
After finishing Chemo, Victoria is shooting up and as she approaches her 7th Birthday I am trying harder to focus on the day in hand and not to let the mind wander too much into the future!! easier said than done but this was brought home to me recently when one of the staff from their school, aged 20, was killed in a car accident. We have NOW and today make each one count!
Carpe Diem!!!
I could go on for days about the agenda of emotions that you will feel in the next 6 months. Each and every one of them, you will question and analyze 'till 'yer blue in the face...
Let me assure you, that each and every one is expected, fairly common, "NORMAL" and 'you're not the first one to feel this way...'
For what it's worth, Kassie finished chemo on March 5th, 1999 and I'm still scared, too... although with each day, it does get easier.
Give Daniel a great big "ATTABOY" for me. I doubt he will remember very much of it all. Kassie remembers some things (she turned 7 in June)... mostly the fun parts of the clinic... Thank God she doesn't remember certain things the way I do... I do know that you, we, I, us, - as a parent, will never forget...
Some would say this is our legacy and we have to pay it forward... There isn't a parent here that could ever forget, and I believe that our loving desire for our child's future, no matter what it holds, is what keeps most of us "checking in", "stopping by" and "perusing." Even in the "unfortunate cases" that brief time and the learning curve--my heart and Kudos to Daniel.
Hi, Daniel finished chemo. about 2 months ago, and I can honestly tell you that I have so much Joy. I must admitt that the fear of him coming off was greater than the actual experience. Now, I feel true joy, without a feeling of sadness inside, it is like the storm is now over and it feels so good. I feel like I have a new perspective on life , and that this is a gift for all the pain we went through. Daniel is doing so well, going to kindergarten, and being just a regular guy...we are so fortunate. We go for blood work every 2 weeks for the first year off...we see some of our friends children, not doing so well. We pray for them, and just try to live our lives with more appreciation than we did prior to this illness. We give thanks to God for his healing. Amen. I find I still live in the moment as this is all we have for sure, however, I stay positive and optimistic.
Our son Michael is 4 months off threatment for Burketts Lymphoma. We are told that if Burketts is going to relapse it is usually in the first 6 months - 1 year; with every month clean being less likely than the previous. WOW! Talk about your anxiety trip! I am a Pastor and God is teaching me more about faith than I ever thought. This Thanksgiving day we all played football in the yard and it dawned on me how blessed we are...you see, relapse is always a real possibility for all of us...and if not relapse then perhaps secondary cancers due to treatment...but today is good and today cancer lost! My son is cancer free today and that is the victory! I we'll deal with tomorow when it comes...but I rejoice in the moment. And this stage of our battle shows us just how costly the fight is...with every day of remmision making the fight even more wirth the cost. FIGHT ON MICHAEL!!!! YOU'RE WINNING!
From Decmber 1995 to July 1996 Lorenzo was in and out of hospital, his treatment was very agressive (as was his cancer).
He had an autologous bonemarrow transplant June 21, 1995, 15 days later we were released from isolation.
We went home (after I sanitized everything from the walls to his toys, couch, windows and we had to give up our 2 manx cats and all plants). He had to wear a mask and no "sick" people were allowed around him. My girls had to wear masks if they so much as sniffled!!
We went in to the hospital weekly until his counts stayed in a safe zone. Then his hair started growing back, his appetite came back, his feeding tube came out.....all steps towards a "NORMAL LIFE" ?
But I was scared.
Scared of not being in the hospital where I had nurses, doctors, nutritionists etc. all around us—safe people.
We were thrown into this life of bald kids, scans, evasive procedures, medical terms I wish I'd never heard of, blood transfusions, blood counts, home care, flush the line, administer drugs thru the g-tube etc. When I recall all of it, I don't know how we did it!
My husband was on Christmas holidays from work when Lorenzo was diagnosed (DEC. 21st with biopsy confirmation Dec. 23rd)
We were suddenly surrounded with other parents, children, siblings, grandparents....all interconnected by their children on the same ward, fighting some form of this horrible desease.
Once at home and no longer there daily, it was like coming home from a summer at camp: NOW WHAT??
What do I do with my time? How can I do daily chores when in my mind I am terrified that the cancer will return??
It is a feeling of missing something. Now, returning to the hospital for check-ups is like visiting a strange relative. Everything is different, faces, procedures, CUT BACKS!!!!!
But I just look at Lorenzo and am so grateful to everyone who helped us, and to his oncologist for truly saving him.
But foremost, to the good Lord, our Blessed Mother and to St. Anthony for hearing our prayers and blessing us with Lorenzo's recovery.....we are truly humbled by this miracle.
We cannot try to make sense of this life but instead do all that we can to make it important and meaningful.
God Bless all the little squirrels and their parents (families)
Here's a new one to consider. After the chemo was over, my wife and I looked for counseling for our daughter so she could start dealing with the emotional trauma of her ordeal. Katie decided she just wanted to leave cancer in the past and not ever look back. But like a festering wound, her anger and depression just got worse and worse. A week ago, she decided she couldn't take the pain anymore, and attempted suicide. Luckily, I found her in time and got her to the hospital and now she's finally getting the help we've been trying to get her for four years.
The oncologists never told us that major depression can result from the emotional trauma of childhood cancer. As a matter of fact, my wife and I tried to tell them, but they wouldn't listen. I've learned from reading, that depression, anxiety, anger, grief issues, and post traumatic stress strike between 10-25% of childhood cancer survivors.
So much of my journey of my son's cancer has been an emotional one. When treatment ended for him, it was the best of times and the worst of times. I was elated that we reached such a joyous milestone; that we were fortunate to be given the gift of health and a chance to resume some flicker of normalacy in our lives. But the burden of monitoring my son's condition seemed now to solely fall on my shoulders. I no longer could rely on the numerous hospital visits to assure the neuroblastoma was kept at bay. I didn't trust that the monster was gone and found myself jumping at the shadows, that THIS was the dreaded time the cancer is coming back. I would mentally assess him constantly, and every suspected symptom sent me into panic. But it hasn't come back, and with every day I build up a little more trust that my son indeed is healthy and cancer free. I don't find myself looking under the bed for monsters anymore, but I don't think you ever stop wondering if they are lurking around the corner.
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My emotions and thoughts..........
It was like a cloud, just waiting for the time to go back to the doctor. It felt abnormal to not be there every week. It was almost harder than being on treatment. But it does get better. We have been off treatment for 3 years and life is great.