More About The Cold Caps

The cold caps have been in the news recently. They are finally going to do a clinical trial to see if they work. There are a lot of people who have used the cold caps with complete success, and I am one of those people.

Are they hard to use? Well, I wouldn't say hard, but it requires commitment. It is some work to get the ice and drag the cooler around. There are chemo centers putting freezers in and I believe using the cold caps would be much easier if you didn't have to get dry ice and drag a cooler along.

Is it painful? The first one for each session is really cold. It is a bit harsh but your head gets numb pretty quickly and it really doesn't hurt when its numb. They also gave me ativan (like valium) when I did my chemo so I didn't feel too much.

There are a lot of places you can learn more about the caps. I got a lot of great information from breast cancer . org. Here is the area where they talk about the cold caps:
http://community.breastcancer.org/forum/6/topic/735873?page=302#post_3637075

Here is the Punguin Cold Cap website:
http://penguincoldcaps.com/

They have information from a lot of studies on their site. These caps have been used in Europe for many years and have been studied extensively there. The scalp cooling therapy to save hair is considered a normal part of treatment in many countries.

Here is a link to an ABC news story where they are talking about doing a clinical trial with the caps. This is a different brand than I used. I used the brand Penguin Cold Caps.
http://abclocal.go.com/wtvd/story?section=news/health&id=9182016


I really hope the use of these caps becomes more widespread. I used them in 2009 and I was told I was the first woman in the NY metropolitan area to use them. It was so helpful to me. I was able to go about my normal life and not look like a cancer patient. I certainly felt like one at times, but I did not LOOK like one.

It really helped me to have control over something during that time. Chemotherapy is hard. Having everything feel like it is spiraling out of control is hard. If you can maintain control over something I think it really helps.

I have pictures of the Penguin Cold Cap use on this blog. They start with the chemotherapy on 12/7/2009.

If you are reading this because you were recently told you need chemotherapy, I wish you strength in your fight. Feel free to contact me if you have questions.

                       This is a picture of me wearing a Penguin Cold Cap during my chemotherapy.

Dr. Roland - NYU

After tons of waiting we finally got to see Dr. Roland at NYU. I decided to drive instead of taking the train since we had a 10am appointment. I thought it would be tough to take the train during rush hour. Also , finding a parking spot anywhere near a train station  is next to impossible. So we drove in. It is 30 miles from Julianna's daycare. I checked  it with the GPS. That is about an hour by train or a bit over two hours by car. Unless you are from this area you probably can't understand that, but it is reality.

I knew where a good street parking area is and it is only a block from NYU. There is no parking there from 8 am to 9 am due to sweeping. That means if you zoom up a bit after 9 you can score a spot. I lucked out and got one. Street parking is $7 for two hours and a garage is $20 for about the same amount of time. It is more than the money though, I am not comfortable giving my keys to the guys who run those garages. Anyone who has seen Ferris Bueller's Day Off  knows what they do to the cars.

We got to our appointment a bit early. I had already done all the paperwork because they sent it to me online. I had to pay ahead of time, $600. They don't take my insurance but I am hoping I will get something back if I send the receipt in.

We saw Dr. Roland and he examined Jack and looked at his ABR results. He said he appears to be a good candidate for cochlear implants but he will have to get some imaging first (CT, MRI). He said it does not appear that Jack has genetic deafness and it is likely from an ototoxic event. In Jack's case that is the simultaneous administration of gentamicin and lasix. We will still do genetic testing to rule out that unlikely possibility, but no one seems to think it is likely.

He did feel that we should get Jack hearing aids. Although he does not think they will help him hear, he thought it would help keep his nerves stimulated. I asked him what the timeline would be for Jack having surgery. He said there is almost no wait for him, but I would have a wait getting into the NYU Cochlear Implant Center where they will do the imaging. After the imaging we will have to decide what type of equipment will be best for Jack and, secure approval from my medical insurance company. So it might be a few months before he can have surgery.

I left Dr. Roland's office feeling pretty confident that he will be able to help Jack. I called the NYU Cochlear Implant Center for an appointment and had to leave a message. I am hoping they will get back to me soon because I would really like to get it all set up.

Tomorrow we are off to Oregon for a family reunion. We are pretty psyched about it! I am hoping it isn't too bad flying so far with both kids. We shall see.

My Unconventional Path To Motherhood

“Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body. ” ~ Elizabeth Stone



I get a lot of calls from people asking if I would speak to them or a friend of  theirs about certain experiences that I have had. Often it is about breast cancer or the Penguin Cold Caps or surrogacy , but most often it is about pursuing single motherhood. I have had great phone conversations with women I have never met about these subjects.

Lately I have had more and more conversations about single motherhood and infertility. I speak to many women  who are trying to make this big decision. Should become a mother via sperm donation?  I remember how long I thought about it before I finally started trying. Would I be able to do this? Will my child be sad that he/she doesn't have a Dad? Will I be able to balance it all? How will I handle it financially? Will people be judgemental about this decision? I went back and forth about it, literally for years, before I decided to start trying. I think the one thing that made me decide came from an email conversation I had with a woman who was a single mother by choice. She said to think about your life in ten years if you do it or you don't. That made my decision easier. I thought of a busy life with a little child vs. a quiet life filled with regrets. Decision made.

I think so many women feel the urge to be mothers. Not all of course, but a lot. We think it all has to follow a certain pattern. Meet a nice guy, settle down, have kids. What if you never meet someone where you just click? I have dated really nice guys but I couldn't see myself with them forever. There were guys I met where we clicked great but they had no interest in having kids and that didn't work for me. I have friends who have confided in me that they were never really in love with their husbands but they married them because they wanted children so badly. I know I couldn't do that either.

It took a long time for me to conceive Julianna. I was 40 when I went to the fertility clinic for my consultation, 41 when I started trying and 42 (by 4 days) when she was finally conceived. I think a lot of women know that it is harder to conceive when they are older but they think it will be fast for them.  I was in that group. I became somewhat obsessed. I read everything there was to read about fertility treatments. I was so angry at myself for waiting so long to start trying. When I found out you could check the success rates for IVF clinics on sart.com I checked them all. I read every fertility blog, did acupuncture, took supplements and went to the fertility clinic daily. It took six intrauterine inseminations (iui), three invitro fertilizations (IVF) and one frozen embryo transfer before I was blessed with Julianna. Along the way I had one ectopic pregnancy that was heartbreaking but made me more determined to press on.

I always wanted Julianna to have a sibling. I tried myself for some time after she was born. When my friend told the OB I used when I was pregnant with Julianna that I was going to try to have another child  he said, "She might as well take a gun and put a bullet in her head, because the outcome will be the same." I went to a perinalologist who told me I could try. She said I had a 40% chance of having pre-eclampsia and HELLP syndrome again. When she read my medical records for when I had Julianna she said she was surprised I survived it. She said there was really no medical explanation why I did. She thought with careful monitoring she could get me through a pregnancy but I had a super high risk of having a very premature baby because she wouldn't let the pregnancy continue if there was any risk of it becoming life threatening. I did two IUIs and three IVFs. I had two early miscarriages but no baby.

When I got the breast cancer I stopped trying. Because the type of breast cancer I had was hormone negative that would not have stopped me from carrying another baby. However, I strongly believe that my breast cancer was God's way of telling me not to get pregnant again, that it wouldn't end well. I want my life, I want Julianna to have me and there are other paths to motherhood.

I am thankful that there are generous people who are willing to share their fertility and gestational capabilities through gamete donation and surrogacy. Tierney will always be Jack's "Tummy Mommy". Without her we certainly wouldn't have Jack and she went through an awful lot throughout the journey.

To all the women who are trying over and over against all odds, with failures and heavy hearts,  I pray you find your way to your child(ren). My memories of that long dark struggle still bring heartache. If what you are doing isn't working, remember there are many paths to motherhood. There is sperm donation, egg donation, embryo donation, surrogacy, adoption and foster parenting to name a few. Some of those methods are costly but not all are. There are plenty of people who don't want to destroy their embryos and would like to donate them to someone who can give them life and love. I happen to have three embryos that I am going to donate to someone, but I am waiting for the results of Jack's genetic testing.

Life has been full of struggles on many fronts over the last few years. Through it all it is my children who have blessed me in ways I can not describe. The enthusiasm, strength and wonder  of their little hearts will always keep me going.

Almost all of the women I speak to who are contemplating single motherhood ask me how our life is and they want to know if I have any regrets about my decision to do it on my own. The answer to that is that our life is great. We are busy, happy and (finally) healthy. I do not think my children suffer at all from not having a Dad in their lives. That may change in the future, but I do not see that now. And yes, I do have one regret and that is that I didn't do it sooner.

If you are making this big decision I wish you luck. I hope you find peace in your heart, whatever you decide.

Pictures

For some reason Blogger distorts the pictures and everyone looks shorter and fatter than they really are. I really do not need any help with this myself, but my kids are not this short and fat.  However, I think if you click on the pictures you can get the proper picture. I do not know why this happens.

                                                     
                                                            Jack. Ready for summer!!

 
                                                           Jack, digging the shades.

                                                                            Bathtime!!

                                                        Jack post op at the hospital

                                                      Cathy with Jack at the hospital

                                              Julianna dressed for fancy day at school.

Julianna on a regular school day. Every day is fancy day for her.

                                                             Julianna at soccer.

                                                         Julianna at the LI Ducks game.

                                             Dinner with Grandma and Pop Pop. My Dad was having an especially good day and we all enjoyed it.         

                  

Early Intervention

I had my meeting with Early Intervention. Jack was evaluated when he was 3 months (adjusted) and tested at or below one month old for everything except "social" where he tested over 3 months old. He is a pretty social guy and loves to laugh and smile at everyone. He was approved for physical therapy twice a week and speech therapy once a week. At his age they do speech therapy through feeding and it is really about strengthening his mouth and facial muscles.

Early Intervention usually will come to the baby's home or daycare. I was really counting on that because I am having issues getting him everywhere and still getting to work. However, they are unable to find a physical therapist who can do that. So I am going to have to take him to physical therapy twice a week. They found a place that is close to my home but I am still going to have to bring him there. They think they will be able to get someone to come to us in the fall. I sure hope so.

We still go to our craniofacial therapist. She is also a physical therapist and is really helping Jack. We were there yesterday and Jack is really progressing. I can't imagine how he would have tested if he had not been receiving this therapy. She taught me a lot of exercises to do with Jack. His problem is that his neck and back muscles are really tight from all the weird positions he was in when he was on the ventilator. They kept him sedated so he couldn't move much and that made those muscles stiff. He also has low muscle tone in other areas. None of the therapists see any evidence of cerebral palsy and that does give me some comfort. They all do think he should catch up eventually but it will be a lot of work for him.

I do see him showing signs of improvement. He brings his hands together and he also pulls his feet together. That doesn't sound like much but going "midline" is a really good sign. He has discovered his feet but he can't grab them because his back muscles can't bend enough. One of his exercises is to roll him to try to stretch out his back. Another is to put a pillow behind his neck to stretch his neck muscles out. His neck is so tight that I really have to bend it so much just to wash him or dress him. His tight neck causes his tongue to stick out.

He has been doing a lot better with his reflux. I have stopped giving him the zantac and he really hasn't had any problems. He loves to eat and is getting to be a little fattie. They kept telling me he would have feeding issues due to his palate but he really hasn't.

Jack and Julianna are going to the doctor today. She is having a recheck because she had strep throat and he is having a well baby check. I  will see if he is on the chart for his real age yet. I think he might be. Jack is gaining and growing really fast. It took Julianna forever to get on the chart for her real age.  After 5 years she is still only in the 5th percentile for height and about the 20th for weight. She is small in stature but huge in personality.

I really am blessed with two happy kids. People always ask what I want my kids to be. My answer has always been that I want them to be happy. And they are very happy smiley kids.

Retinas

Jack had a tiny dot of blood in his eye and it freaked me out. With his history of retinopathy of prematurity (ROP) I was afraid his retina might be detaching. I don't even know if you bleed from a detached retina, but it made me very worried. We went to the pediatric opthamologist. She had to dilate his eyes which took about 45 minutes. Then we went in and she checked each of his retinas while I held him and he screamed like he had a hot poker in each eye. She had to hold his eyes open with a clamp. She did use numbing drops but I am sure it hurt him. She said his retinas looked really good and the blood spot was nothing. Phewww.

She also told me we had to come back in 6 months. She said that babies who had ROP, even if it was a minor case like Jack's, will likely need glasses early in childhood. That part is a bummer, especially since it might be hard for him to wear glasses and the external part of the cochlear implant since that goes over his ear. I am guessing they must have a way to do that but I do not know how they do.

After the appointment I dropped Julianna off at school and then took Jack to daycare in Merrick. When I was backing out of the parking spot at the daycare I heard a loud pop and then heard my front tire hissing. It turned out I ran over a brown bag with a glass bottle in it. I made it to a gas station hoping they could plug the tire but they could not. They put my donut on and are ordering me two new tires. They said they really can't mix an old and new on the front. I have to go back tomorrow to get the two new tires.

So, it has been one of those days.

This is an interesting article about the long term complications of ROP and the eyesight of premature babies who did not have ROP.
http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2214.2002.02801.x/abstract?deniedAccessCustomisedMessage=&userIsAuthenticated=false

The more I learn about prematurity the more I can say, do everything you can to keep that baby inside for as long as you can.

So Many Appointments, So Little Time

Jack started daycare today. He slept through the whole check in process. Right now Julianna and Jack are in two different daycare centers. This adds a ton of time to my pre-work routine and it is long enough already. Gone are the days when I could throw clothes on and run out the door. My early day has me feeding and dressing Jack, getting Julianna dressed (no small feat for Miss Fancy and I must accessorize), getting showered, packed up and out the door. After out the door we drive to Children's Nest in Merrick where Jack will be dropped off, then Learn and Play in Mineola where Julianna gets dropped off and then I get to work. By the end of the month they will both be in Children's Nest. I would have gotten them in the same place but there was no room in Learn and Play for Jack and Julianna has been practicing for her big graduation for months. That big day is Friday. I am happy they will both be in Children's Nest. Julianna has been missing her friends from there for the whole year.

I am having issues fitting all Jack's appointments and work in. I also realize that it is not going to get easier. Tomorrow we have kindergarten screening for Julianna and then I have an Early Intervention meeting about Jack. I took the day off since they are both long meetings. On Wednesday Jack has an opthamology appointment. He still has immature retinas and I can't risk him having any problems with his eyes, especially considering his hearing. That appointment is in Great Neck and would require me leaving work in Mineola, going to Merrick to get him, then going to Great Neck with him, back to Merrick to drop him off and then having to go back to work in Mineola. Anyone who has driven on Long Island knows that would kill the better part of the day.

What I think I need is a personal assistant who could do something such as pick Jack up from daycare and bring him to his appointment where I could meet them on my lunch. Then, after the appointment they could bring him back to daycare. I just can't keep taking days off from work.

I am thinking I may have to get a full time babysitter for home when the fall comes. I like the idea of daycare because Jack will get to be with other babies and because they are open a lot. However, Jack's Early Intervention schedule and doctor's appointments may make that impossible.

I remember thinking it would be so much easier once he was out of the NICU. He is an easy baby but his appointments are plentiful. He sees the audiologist, ENT, GI guy, pulmonologist, cardiologist, developmental pediatrician, opthamologist, craniosacral therapist and genetic counselor. When Early Intervention starts he will have another 3 to 5 appointments a week. Then we will also have to go back and forth to NYU in NYC for all the appointments to see if he is a cochlear implant candidate. I am wondering how anyone who is also working can balance all this.

I am going to ask around to see if there is any college student who would be interested in driving Jack around for a part time job this summer. He is a happy boy and loud music in the car does not bother him at all.