thecookiegal

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“I am sorry but…”

on March 6, 2012

This is Alexander in the ER on March 8, 2010 the day we found out about the Cancer

“I am sorry but…” Four words you NEVER want to hear from a doctors mouth. Those were the terrible words we heard in the ER on March 8, 2010. They were followed with “we found a mass in Alexander’s abdomen”. We stared at the doctor in disbelief. How could there be a mass in his abdomen? What does that mean? We would soon find out. Not long after that, we were introduced to the man who would become Alexander’s primary oncologist. He had with him residents and a medical student. They examined Alexander, we talked about how quickly he had changed within the prior few weeks, and showed him videos of Alexander’s- happy and the very very sad and upset. Shortly after that we were brought up to the Neely Bone Marrow Transplant Unit. The place that would become our second home. He was put in a crib in a room. Nurses came to him quickly, bringing him toys to play with and machines to set up to watch his vital signs. Everything happened in Slow Motion for us, but yet, was going very quick. By about 12 noon they were ready for him in MRI. We went down and met the woman that would quickly become out favorite anesthesiologist. She explained what would happen. We gave Alexander a kiss, and they put him to sleep. We walked out to go get some lunch as they said it would be “hours” for the MRI. Once we were in the hall, Richard broke down in tears, wondering if we would ever see Alexander alive again.

We did see Alexander again within a few hours, and we began the “cancer journey”. A journey that no parent ever wants to go on. The next few days were filled with blood tests, scans and a lot of waiting. He had his biopsy and then we had more waiting to confirm that it was indeed neuroblastoma. We would learn so many different things over the course of the next couple of weeks. Chemo, counts, watching for a temperature rise. Right from the start Alexander had issues with his blood pressure and we would meet the wonderful nephrologists that would take care of him throughout his treatments. We met many wonderful nurses, doctors and other staff as well. It was clear that he was in a place that was going to give him great care.

The next 13 months would be filled with days in the hospital, days in the clinic, medications, more medications, feeding tubes, IV nutrition, the list goes on and on.

During that time we met some of the most wonderful people in the world. I have made friends that I wish I had never met, but will be forever grateful that I know! When you end the “cancer world” you have to learn a whole new language. It isn’t just called “chemotherapy” it is Etopside/ VP16, Cisplatin, carboplatin, Vincristine, Doxorubicin, Topotecan just to name a few! Each one has its own set of side effects, length of infusion, type of infusion! It can all be very confusing and hard to understand. But, as you make these new and wonderful friends, you can “compare notes”. Share what kind of side effects your kid had, and how to deal with them best. Of course not every kid will have the same side effects. Alexander never had the mouth sores until he went through his Bone Marrow Rescue treatments, other kids had them all along. Some kids “counts” drop really fast, others don’t drop very much at all. When Alexander first started treatments, his counts never went to Zero – this was great and meant he didn’t have to stay on the GCSF (a daily shot in the thigh!) as long. But, as he had more and more treatments, and they changed his protocol, his counts dropped to Zero and stayed there much longer. We had to be even MORE careful about taking him out and staying away from as many germs as possible. It also meant more admissions, because now he was developing fevers, and more often than not that let to an infection for Alexander.

I have always been the one to bake cookies, send cards, money, etc to those in need. It was very strange for me to be on the OTHER side of the table. But, I did learn to accept the wonderful gifts and donations that people offered to us. One of my friends went around our neighborhood to tell our story. The generosity of these people were truly amazing! Most of them, I did not know and had never met, but yet they reached out to us! We were given presents for Alexander, money and a box filled with various gift cards for us!! I was overwhelmed by it all!

When Alexander was first diagnosed we had a lot of people ask “what can we do for you?” At first it was so hard to know just what it was that we actually needed. It was all so overwhelming at first! But, as time went on, we were able to figure things out and let people know.

I have made a list of things that I think would be helpful if you ever find someone in need like we were.

1. Meals! Finding time to cook can be very difficult! Find out what the family enjoys and make them a meal or two. Be sure to bring meals in disposable containers, so they don’t have to worry about getting your favorite pan back to you. Since it was just Richard and I eating, smaller individual or 2 person servings were best. Even better were things that came in microwaveable containers! We spent a LOT of time in the hospital, more than at home. There are no stoves/ovens in the hospital, but there is always a microwave to be found. You could set up a Care Calender for the family, so people can sign up for meals, and other help. http://www.carecalendar.org/ I know one family that used this and it was very helpful for them.

2. Yard work! Alexander first got sick in the winter, so snow shoveling was what we needed first. Thankfully, my mom had hired someone for the driveway. We did have some neighbors that helped out with the walkways. We have a pretty nice lawn with lots of flowers and trees too. But with those things come WEEDS! We tried to keep up at first, but since we were IN the hospital more than OUT of the hospital, it got very overwhelming. I reached out to the Youth Group at my church. I had offered to make a donation for their help, but they stepped way up, and came and did the work every week or two! It was such a wonderful help for us!

3. Gift Cards!!! At the time of treatment, there was an Au Bon Pain at the hospital. A couple of people found that out, and sent me gift cards for there so we could “treat” ourselves. Find out what, if any restaurants and stores are near the hospital or where the family lives. We received many from CVS, Target, etc, which were very helpful for the little things you just need in life. Find out which supermarket they shop at get them cards for there! We did also receive several pre-paid MasterCard/Visa type cards. While I did very much so appreciate them, they can sometimes be a pain to use! Some stores are fine with them, but I found other stores, that if the balance was less than the amount of the order, I could not use it!

4. Flowers and Fruit – Before sending these, find out if the patient can have them! On the unit that Alexander was on Flowers and Plants were NOT allowed. Prior to all of this, I didn’t know that fresh fruit was NOT allowed by some cancer patients at different times of treatment. Edible Arrangements are wonderful, but as a nurse, I can tell you that sending them to the Hospital is NOT a good thing. They take up a LOT of room that just isn’t available in the refrigerator.

5. CALL – E-MAIL – VISIT! Please do not treat people like they have the plague! We had many people say to us “I don’t want to bother you”. Most people have caller-id – if they don’t want to talk, they won’t pick up the phone!! Many of my friends from the hospital have talked about how they felt so alone, because their friends stopped inviting them to things, or calling them on the phone, or e-mailing them. Yes, we might not be able to join you for an event, but you never know and just being invited makes you feel good! . When Alexander was in the hospital, it was actually sometimes EASIER for me to get away! If he was doing well, I did not mind leaving him, because Richard or my mom was always with him, as well as all of the nurses and doctors and I would just be a phone call away. I NEEDED to have breaks from the hospital! There was one time, I realized I hadn’t even left the UNIT for 2 days! It was a very small unit, and you can go mad being there ALL the time! Call up and ask if you can visit, and take someone out for lunch or a cup of coffee or something like that. We kept a care pages during Alexander’s journey. If someone does that, read it – and write messages! I wrote every day, and I wouldn’t expect someone to write a message every day of course. However I did read each and every one of those messages, and they were uplifting to me!

6. Become a blood and/or platelet donor! Alexander received close to 100 transfusions during his treatment! Each time you donate blood you can help up to 3 different people! You won’t be able to donate directly to the patient, but you WILL be saving a life!  http://www.redcrossblood.org/

7. Get yourself on the Bone Marrow Registry. http://marrow.org/Home.aspx Again, help save someone’s life!

8. PRAY!! No matter what “god” you believe in say some prayers! While we didn’t get a miracle for Alexander, I know that is was everyone PRAYING for us that got us through. Sometimes, that is all that you can do. Pray for PEACE for the family – for strength to make it to the next day.

Some things NOT to say or do (and yes these are all things we heard or our friends had said to them!)

1. “Things happen for a reason”. Umm….yeah, no. 8 month old babies do NOT get cancer for a reason. Babies are not BORN with brain tumors for a reason.

2. “God Won’t give you more than you can handle” Oh yeah? You ever been in THIS situation? Please keep you “words of wisdom” to yourself!

3. “Be STRONG!” Why? Why not be weak? Why not cry non-stop all the time, wouldn’t you?

4. “I would like to send a get well card but he is not going to get well.” Yeah, but you could send a thinking of you card, or a card to make that person laugh? One of our friends daughters got a card that said “CHEMO SUCKS”!

5. “It must’ve been what she ate while she was pregnant” (not said directly, but on someone else’s facebook page – be care what you post out there!)

6. “Have you thought about XYZ Hospital?” Someone asked me about St. Jude Hospital. Yes, it is a wonderful hospital, but I wasn’t ready to pack up and move the family out of state! Unless you have had first hand experience with the same situation the family is going through, please keep you comments to yourself. No matter what you have read/head about from someone else, people have chosen where they want to be treated. For us Floating Hospital was the BEST place to be. Even when we did get a second opinion, we really wanted them to say the same thing so we wouldn’t have to change hospitals.

7. Do NOT send emails/links about myths of the things that I might have eaten or drank that could have caused the cancer.

8. If someone asks you for help, do not suggest something on how they can get it themselves. One example I got from a friend: Asking for help: do you mind stopping for a gallon of milk and bring it by while you’re out answer: did you know there’s a drive- thru diary a few miles up the road you could go.” At one point there was a particular cookie I wanted – sure it was “just” a cookie, but I was having such a hard time that this little cookie would have made a BIG difference! Many people gave me suggestions of where to go find one, but only one person actually GOT them for me! You would be amazed at how such a little thing as a cookie will make a BIG difference!

9. “I wish there was a manual out to teach me how to talk to a person who is going through Cancer and exactly what to say to them” Umm…sorry, if WE don’t get a book on how to deal with your child getting cancer at day old, 9 weeks, 8 months old, 4 years 12 years old, etc, then YOU just have to figure out how to talk to us on your own!\]

10. “I don’t know how you do it”. Well, do I really have a CHOICE? You just DO – you take it one day at a time and keep on fighting!

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19 responses to ““I am sorry but…”

  1. jane says:

    Well said Nancy………bravo, keep preaching sister!!!

  2. Janel Wastaferro says:

    Very well said!!! You are a talented writer who speaks from the depths of your heart. I feel your passion and anger. Your message is so constuctively clear. I think it is therapeutic for you writing all these thoughts and feelings out…both for you and those reading your blogs. I hope you do write a book someday. What you have to say will help the many going through this and help their family/friends help them get through it. I was definable always afraid to say the wrong thing….and I’m sure I still said things that weren’t right. I was afraid to pass a germ that would get you sick and then you had to stay away from Alexander.

  3. Dorothy says:

    What a moving post. May I add one to the list of things that are helpful? If the family has more than one child, childcare may be helpful. The other child or children often get lost in the shuffle.

    Most of those don’t says were said to me, as well. Sometimes I wonder how so many people seem to lack filters. My “favorite” was “well at least he doesn’t have cancer.” (Aplastic anemia actually has a much lower survival rate than leukemia, as a lovely resident said to me before he was diagnosed. That one goes on the list of things doctors shouldn’t say.) People think if they haven’t heard of it, it must not be that bad. “I don’t know how you do it, I wouldn’t have the strength” bugged me. What choice do you have when faced with the situation. It isn’t a compliment, even if it is meant to be one.

    • thecookiegal says:

      I was always amazed by the families that had other children. One of the first families that we met were from Maine. Mom had a 6 year old and a 5 MONTH old at home! Cancer really affects the WHOLE family

  4. becky says:

    nancy: what i have a hard time with is writing messages, even thought i have been thru the same stupid cancer, i still dont know what to leave for a message. I do read everyones care pages but hardly left a message. I’m not good with that. what i like about carepages is that you can see who has read them, which made me feel better that i didnt know what to write. 🙂
    prayers hugs and smiles..

  5. Erin says:

    Nancy, I’m continually inspired (though not at all surprised) by the way you continue to speak up on behalf of Cancer patients/families everywhere, and to educate all of us, (even those of us who “live” in the medical world)! As usual, you’re spot-on with so much of what you wrote. Thanks for writing it all out. Who knows– maybe that “manual” everyone wishes for is what you’ll eventually compile from all these journal enries and blog posts! We’re praying for you every day. Love, Erin (& family)

  6. Jackie says:

    I have one you can add to your list…Don’t tell me how your child is impacted by my kid’s cancer…Honestly, I don’t give a sh## about how sad, upset, confused they are…You want to see sad, confused, upset, constant pain, fear…take a look at my little guy- your kid isn’t going to die from his/her situation…mine doesn’t have very good odds of making it…are people really that dumb or are we just sensitive??? Still love reading your posts…Jackie Goodell

  7. Grace Pitts says:

    Nancy,

    Just read your incredibly touching and well written blog. You and Richard have touched many people through your ordeal. This is REALLY a manual you have written. I hope you send it to the Boston Globe. I think it is an essay they would print. It would help so many, many people. You continue to amaze me.

  8. After reading your recent post, I feel like I know you. I am SuperMac’s grandmother. We have heard many of the same comments that people made to you. I think it comes from the universal feeling of helplessness that people experience when faced/informed about illness in a child. People often just don’t know what to say or do. My heart goes out to you – there is nothing worse than losing a child. We have great expectations when our children come into the world. We look at each child and think . . . future. When this is snatched away from us the despair we feel is indescribable. Our family is in the midst of our journey with Mac and the anxiety around all the issues he faces coupled with the uncertainty of the future becomes all consuming. I am not going to send along any sentiments except for thank you – I hope you do realize how much your kindness and help means to us. My daughter and her family fully appreciate the helpful links to websites.

    • thecookiegal says:

      I am glad I have been able to help with websites I have posted. In case you were wondering, I found out about Mac by way of a Cursillo Prayer Chain! I don’t know who is was that had sent out the first message, but I started to pray for him right away. I was happy to see he was at the Floating, because I knew how well they would take care of him!

  9. Nancy, I clicked over after you left a comment on my blog. As I read some of the posts I got to PTSD and after the first paragraph, I thought, I wonder if that is Nancy and the J’s. Sure enough. God has given you a very special gift to share such a painful journey in a way that profoundly impacts those who read. Thank you for sharing these things to do or not do–the last thing anyone wants to do is add to the burden of a grieving person, yet some feel so at a loss as to how to encourage and support. My prayers are with you and your husband. Blessings, Ginger

  10. […] thought we were pretty lucky that it had taken him 7.5 months to throw up!  21 days later, he was diagnosed with STUPID cancer.  Richard and I have been back to that restaurant, but I couldn’t go there again for a […]

  11. Robin Onuma says:

    thank you for posting this Nancy. I have read similar bits and pieces here and there, but it is so nice to really hear from someone ‘in the know’ what to and not to do and say. I almost feel like when a family is given a grim diagnosis, they should recieve a bunch of pamphlets with your information on them to distribute to their friends and family to avoid the awkwardness and unintentional rudeness. More people need to know this information, because these diseases are not going away anytime soon (though we can always hope so).
    Robin

    • thecookiegal says:

      if ONLY there were pamplets! I think people just need to more “think before they speak” and think about what THEY would want to hear if they were in that situation!

  12. […] far the last thing on our minds when we sat in that ER.  But, there we were, hearing those words “I am sorry but…”  With in the last 2 years, I have gone to 4 funerals or services for people who died […]

  13. […] was the 4th anniversary of the day we heard those horrible words “I am sorry but….”   The day that the world of STUPID childhood cancer entered our lives.  Much of the day is a […]

  14. […] can get my mind spinning to that place.  The place where I would hear once again “I am sorry but your child had […]

  15. […] March 8th, marks 6 years, since we heard those words “I am sorry but…” . In a few weeks it will be 5 years since we last held Alexander in our arms and said goodbye.   5 […]

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