Hi CY Year - 2009 - Rebooting the Immune System

Well it took me a bit longer to do 2009 --- Age 5 - 6 but it is finally done! This was a long year and definitely the most intense year of treatments so far.

We love our baby and it has taken a lot to put these years together - it's hard to see what our life has become and what is now normal to us.

Enjoy

AGE 5 - 6 YEARS OLD

Hi CY - Day 2

Well it's been a bit crazy around here and we've met many doctors and nurses. But it's nice to know the ones that are assigned to Haven and that they are able to learn about her and this crazy disease.

Haven has been having wild sleep patterns - which we are told is due to the high levels of Cytoxan. I think she even scared her nurse Patel the other night. The nurse told me she came in the room in the middle of the night and Haven told her to be careful because there was a little girl outside her window that keeps staring at her. She told the nurse this over and over. Haven is on the 8th floor!! The nurse was joking and telling us that she wasn't going to come back in here.

Then during a diaper change Haven decided to become a ninja and beat everyone up with her superstrength. Kris said that was around 4am and by the time they were done changing her both had a big sigh of relief.

We finally got to give Haven a shower yesterday. She is required to have a shower each day to keep the germs away. This is a huge task. We have to get the nurses to unhook her cables and wrap up her central line so it does not get wet. Then we had to put a chair in the shower so she wouldn't slip - she fell the last time she was here and took a shower.

After all this we got settled down when the Cytoxan hit her bad. I spent the rest of the afternoon up to my elbows in diarhea! Yea, that was fun!

Around 6:30pm Haven said she was really tired and wanted to take a nap. She was asleep within 30 seconds and about 1 minute later I was calling the nurses and doctors in. She was snoring very loudly and very deep in her chest. The first nurse and I couldn't wake Haven up so she called the Oncologist in and by that time Haven was awake.

She fell back to sleep about 1 minute after they left and I watched her. I took 4 videos so I could prove I wasn't crazy. Her O2 was at 100 and her HR was at 130 resting. Everything looked good but she was extremely loud and having difficulty breathing. I opened the door and both nurses came out of the station and yelled down to me "is that her?". They grabbed the other Oncologist and headed in to our room. He listened to Haven for a few minutes before waking her up. He just wanted a base line to know if it changes over night.

The Hi CY is given to Haven at 10pm. We were going to give her Benadryl to help her relax during the treatment but about 10 minutes before it was to begin we canceled that. I was too worried that putting her in to a deeper sleep during chemo would be a bigger problem than we needed.

............

That title is about how my mind feels right now.....just dotty and blank and numb and tired. I can't describe to anyone the gnawing feeling in my stomach at what is about to happen to our baby. Kris has been packing and preparing for his 5 month lockdown and I have been getting work in order to take as much as I can with me to the hospital next week.

It's now 10:15 and I'm washing clothes-typing on here because I haven't in a long time-and packing whatever I can remember to pack.

We will get up at 4am to get everything ready and in the car and then get Miss Haven up to head to the hospital by 5am. We must meet with doctors and anesthesia by 6am and surgery is scheduled for 7am.

After recovery from anesthesia Haven will be taken to her room on the 8th Floor Inpatient Pediatric Oncology. This is where she will remain. Her chemotherapy is set to start immediately after surgery and will continue for 4 days.

This is an extremely high dose of chemo called Hi CY. These 4 days of chemo will take all of Haven's counts to 0 and her stem cells will be forced to rebuild her immune system on it's own. These 4 days of chemo will keep my baby on lock down for many months. These 4 days will eliminate my baby's immune system for an entire year.

I will not go in to the gory details right now as I can barely process them in my head. I have emailed immediate family members and close friends with most of everything.

We have been told the ulcers will begin around day 7. Hair will completely fall out and many other superficial items we need to deal with.

We're guaranteed that Haven will be extremely sick. Due to the high risk of heart failure she will have an EKG done each done to monitor her.

Again I just can't think about this right now and I can't even explain it all again. My heart starts racing at the thought and I want to throw up. I just want my baby to be healthy and lead a full life and at some point enjoy being a child. We have been seeing doctors since the age of 2 1/2 and we are now 5 1/2. Too long to be in and out of hospitals.

Haven's Wheel Chair.....finished!

Her chair is complete and ready for her trip to surgery tomorrow. Painted Metallic purple with lavendar accents. The fabric is butterflies and flowers for the cushion. She really likes it now and is excited to show it off to her nurses.

Thank you to everyone for all of the emails this week. I probably received over 60 emails in the past 2 days wishing prayers and thoughts for Miss Haven. I am truly sorry I have not responded to probably more than two of them but under the circumstances I'm sure you can understand. I have been very quiet. This is the most serious and scariest thing we have ever had to do. I can't even describe the feeling in words.

I have to apologize to one of my bestest friends - Julie - I just haven't even really talked to her in over two weeks since finding out about Haven's treatments. I've just kept quiet. I have to thank her and Maureen for telling Haven's story on their web sites when their children have the same rare syndrome as my baby. I love you both. Julie I will call you tomorrow after surgery!!! Promise!

I also have to thank too many people in this world. Dad and Jeannie for the family love quilt/bringing Lauren in to Haven's life/visiting Haven a couple of months ago/and helping us mentally get through this. My mom and dad for helping care for Haven/buying 23 packages of diapers and totally realizing the cost of these things/making sure she has clothes that fit her. Mom and Simon for coming out every couple of months and staying for weeks at a time to help care for her/play with her/do workbooks with her. All of my family for keeping up with her medically and sending everything they can to make her smile. Aunt Dottie for her friend that makes all the custom fit clothes for Haven. All our friends and people we don't know that constantly send Haven cards/workbooks/crafts. My company...they have been so understanding of all of Haven's medical issues and have helped where they can and have given me so much support over the past 2 years.

There are just so many more people that write/email/call about Haven than I could ever thank. I only ask now if you could take 30 seconds of your day tomorrow and think of Haven so that she can make it through her 5th surgery in a year/massive chemotherapy treatment/5 months of isolation/and a huge welcome home by Thanksgiving.

All our love
M & K

Hi CY - ready to go

Yesterday Kris picked up Haven's wheel chair. Thank you to everyone that donated to her - we have been able to load up on her supplies and get her the wheel chair. So very much appreciated. This will be extremely helpful at the hospital with wheeling her back and forth. That hospital is a city and it's huge.

Haven wasn't happy that it wasn't pink and cool - so she and Kris are going out this weekend to get fabric and pink things to make it cool.

Today we spent the day at Johns Hopkins. We arrived at Oncology at 7am to ensure we were there in time to get the medicine and take her blood tests. We didn't know how much blood they were taking and Haven wasn't allowed to eat until after her CT Scan. This was the first of 3 rounds of blood withdrawl. LOTS and LOTS of tubes. She had to have her blood taken every 30 minutes.

This is Haven finishing up the 3rd round in the play room. By 9:15 we headed down to CT and sat until 11:30 before we got in. Keep in mind Haven had a lot of blood taken in the early morning and couldn't eat or drink anything. She was beginning to look very bad, pale and weak. Then they loaded her up with 6 syringes of contrast for the CT Scan of the head, neck, and abdomen.

We finished CT about 11:50 and headed straight for lunch. Haven ate and drank like crazy. Then it was immediately back to Oncology to talk with Haven's doctor and Child Life.

We reviewed everything about the procedure which I will put up here once I again review all the paperwork and books we received.

Child Life is extremely helpful and it's great to have them there. Not only do the play with the kids in the playroom and their rooms but Kris and I have had a really hard time trying to figure out how to talk to Haven about this. Kim from Child Life sat down with Haven and us to discuss the surgery and putting in the Hickman line. It was so cute. She had a book on the Hickman line that is written for kids. She went through everything with Haven so she would understand and Haven was very happy to know all of it.

I received a book on Bone Marrow Transplants in Children.

Now it was 2:30 and Haven was looking horrible. She had huge dark circles around her eyes, her speach was slurring, and she was wobbly while walking. We were pretty worried and even had her eat some candy - which she never has. Hoping that would put some sugar back in to her system. We got her in the wheel chair and headed to the car. Not even 30 seconds in the car and she was asleep. She was very worn out at home and laid on the couch for a few hours drinking fluids and eating. She is back to normal now and partying.

This is our last weekend home for a very long time so tonight we are partying and watching Haven TV. Tomorrow she will fix up her wheel chair and possibly see a movie. Then Sunday is Father's Day so she and Kris will spend the day together (not like they won't have many of those days coming up).

Thank you to everyone that keeps up on Haven. Thank you to everyone sending her gifts. Workbooks and coloring books are her favorite and she has a few to take to the hospital with her.

Surgery/Chemo update

Deledo at the Surgeon's waiting room

Yesterday was a hospital packed day. We got down to the surgeon's office around 9am and luckily I like him a lot because we didn't get in to see him until almost 11:30. Child Life came in to discuss with Haven what will be happening during her surgery and why we are doing this surgery. Child Life come to talk to children about their diagnosis and what is going to happen to them in a way that children can understand. Haven knows almost all of the Child Life people now.

After talking with the surgeon we understand a bit more what will be happening. Haven will keep her current port (under her skin) - which is good because she loves that thing. The Hickman line will be placed in her chest on the opposite side. So she will in fact have two ports.

The best route is to get the Hickman line to go up the jugular vein in her neck - as this is the most direct route and safest. The surgeon seemed a bit concerned as to whether or not he will be able to fit it there. If it is unable to go in this way they will have to put it up under her clavical. This runs a higher risk of puncturing the lung - which he said if that happens they will put a tube in her side to release the pressure until the lung heals.

Surgery is scheduled at 7am on June 26th - we are required to be there by 6am. Once surgery is finished she will go in to recovery and then will be admitted in to the Inpatient Pedatric Oncology building. She will then begin her chemotherapy (Hi Cy) that day - beginning her isolation and rebuilding of her body.

Tracker at the surgeon's waiting room

After meeting with the surgeon Kris took Haven over to Cardiology to have their workup done. She had an Echo and an EKG. Then over to Oncology for lab work. He said he was concerned with how much blood they took that he got Haven a wheelchair. She told me it was 10 tubes. She does so well with all of this it's amazing.

After that they met me at TGI Fridays (Haven's favorite place) to have dinner. Haven was allowed to have anything she wanted (within reason of course). She picked Macaroni and Cheese and Broccoli. She never has Mac-n-Cheese so she was super excited.

Tomorrow we will be in Oncology by 7:30am to do more labs and a Cortisol check from Endocrine. At 9am we have a CT scan of the head, chest, and abdomen. After the CT scan we will head back to Oncology to meet with her doctors and sign all the consent forms and review again what the procedure is and all of the risks involved.

Then this is Haven's last weekend at home. My mom flew back in from Korea 2 weeks early last Friday as a surprise. She is going to make Haven a huge Korean dinner this weekend - Bulgogi.....I can't wait!!!! My plan is to do absolutely nothing except maybe take her to a movie of her choice.

Thank you to everyone for constantly inquiring about our baby. She is doing well right now. I know she doesn't fully understand everything and we haven't told her that she's not coming home yet. That will be next week. Right now we are just enjoying every minute we can with her.

Love to all