Monday, February 15, 2010

Age 5 - 6 Years Old

We started the year off with some snow and lots of changes to Haven's meds. After a complete year of chemotherapy and a very long year of high dose steroids we made a switch to an at home chemotherapy called Cyclosporin. this some rough stuff. Not only the meds but the schedule of hospital visits. Haven started the year off going to the hospital 3 - 4 days a week for labs since we were doing this one at home. After about a month she was on a constant schedule of once a week. That lasted for another 3 months.

Haven's 5th birthday. We have been lucky to not be in the hospital during birthdays so far. She made her own cake and icing. It was a very delicious cake.

During the holiday season of 2008 our nurses and Haven's pediatrician adopted our family. They were able to raise enough money to send us to Florida and stay at Disney for a week. This is everything Haven wanted. We had a lot of fun our only downside was how much chemo Haven was on. She slept through most of Disney but still enjoyed so much of it. Many of the pictures I have are her sleeping in some form at Disney.

After about 4 days she did let the characters start getting close to her and took photos with them.

One of our favorite places - Germany in Epcot.

Haven's favorite place was the Nemo exhibit and ride at Epcot. It rained a lot on our trip but we didn't care. Especially when you can hide out in a huge aquarium for hours!

During our trip Haven had to visit Arnold Palmer Hospital to have her labs checked. We had to bring all our chemotherapy and medication down with us and were allowed to go as long as we made it to the hospital down there. She did very well.

Haven knows what size her port needle is and was able to give them all the info they needed to have her set up properly. Since she didn't know this nurse she didn't want to help with the blood. Which of course is fine with me. I can barely handle the needle going in to her chest.

Every single night we went back to Epcot because Haven loved it. She would get a hot chocolate and I would have a latte and we'd sit and watch fireworks.

Sleeping on the boat ride. This was the usually position for Haven on our trip. We still had a great time and definitely made Haven want to come back again.

For Valentine's Day Haven was surprised by a big bouquet of flowers since by her bestest friend Mason in St. Louis. I have become close with his mom and Haven and Mason were big on texting each other all the time.

In February Haven had another sleep study. We've gotten pretty used to these. We get there by 8pm - they put us in her room - the finish the wires by 10pm - then she's supposed to sleep. This was at 5:30am when I got back to pick her and dad up. The hospital is 1 1/2 hours away so within a 11 hour period I'm driving 6 of those hours!

Haven loves to cook and watches every possible show on the cook channel. This is one of her special pizzas.

Another day of chemo. After a couple months we decided to go back to Rituxan. Which has to be done in the hospital and takes about 5 hours to administer. We always have them give Haven a dose of Benadryl through her port before the chemo to help her sleep the first few hours.

During a meeting with Endocrine I decided to copy down all of Haven's Prolactin levels. Although it doesn't seem to be a hormone that is a priority to fix it still can be a sign of a tumor in the brain at the Pituitary. I made a graph and submitted it to our Oncology and Endocrine doctors. What it showed to me was the during 2008 when first diagnosed her levels were extremely high (normal is around 18) and then during the course of chemotherapy she started to drop. In June we were doing 4 days of chemo every 3 weeks and we saw a major drop which was great. As we started to taper off the chemo we started to see it climb again. This is her chart through 2008 and 2009.

In March Haven's grandparents came to visit before she had eye surgery. We spent all of 2008 in eye patches and then to eye drops that would blind her one eye forcing her to use the other one. This is Grandpa Beard-off - he brought a quilt to Haven that Grandma Sing had made for her.

Grandma and Grandpa Virginia also came to visit and spend time with Haven before the next surgery.

Haven in the surgery waiting room after being marked. She was to have both eyes worked on to ensure they were straight.

Haven has taken this walk before - she and dad head in to the operating room. Once Haven had the surgery we were called back in to the room as she was waking up to see her. The strings were still in her eyes - they were just hanging out the corners. Haven's eye doctor always has them wake up and do a few tests to make sure they're straight and then will put them back out and make any adjustments needed.

Since Haven was still doing the Rituxan treatments (we did 5 rounds this time) we were sent to the 8th floor Inpatient Pediatric Oncology wing for the next few days. She couldn't open her eyes so I had to feed her.

Playing in the playroom at the Oncology wing. This was our first time ever being on this floor. Haven was living in the playroom. She just loved it.

Haven's nurse Kim. Here they are changing the dressing on her port after her dose of Rituxan.

Haven's eyes up close after surgery. She wasn't feeling any pain just bothered by light.

My angel has straight eyes again......I remember this day so well. We were so ready to get home but Haven had to have her next dose of chemo. Although we told them exactly which Cyclosporin to use (there are two types) they gave her the wrong dose. As we were getting ready to leave the doctors came in and told us they would have to run emergency tests on her kidneys and liver due to the wrong chemo. What a bad thing to say......after about 7 more hours we were let go. Haven's tests came back fine and we now know there are two types of this chemo!

At home relaxing. Haven has always wanted a dog but with so many doctors and how much we're away from home the stuffed ones will have to do.

Next we were sent to Cardiology. With Haven's pulse ox machine and her tests at Oncology we noticed her heart rate was always between 140 and 165 - even when sleeping. Haven wore a heart monitor for 24 hours of testing. A few days later I got a call from Cardiology and he was sending his report over. He wanted to know if she ever slept because he couldn't tell from the monitor. Her heart never slowed down. After more testing his conclusion was that this wasn't anything to do with the heart muscle but had to do with the brain functions.

Back to cooking and trying to live a normal life!

My beautiful angel enjoying a warm day and smiling beautiful for me. Look at those baby blues!

During our meeting with Oncology we were told of the next round of treatments that they wanted to do on Haven. It would be known as "rebooting the immune system" and we would follow the treatment schedule of a bone marrow transplant. We went over the chemotherapy, the 15 pages of side effects this one could cause, and the general "we don't know if it will even work" conversation. But the thought of it getting worse and us not trying meant we were doing it. First thing was we had to get rid of Haven's toe nails. The biggest yuckiness we dealt with for the entire first year of chemo was infection after infection in the toes. The nails had to be gone before we could drop her immune system to zero. These are her precious toes!

Since we were barely given a minute to think I immediately took Haven to get some photos taken before we started this chemo. They made a spot for her and even stayed an hour past closing to get her photos done.

Nurse Katie and Haven taking her lab samples before we start this Hi Cy. She has A LOT of blood taken every time because there is so much to monitor and check. I am so happy we got the cath-o-port...with how much blood is taken from her we'd never get an IV in.

The next week we were called in to the surgeon's office - the one that removed the tumor from her belly - and he was going to put another port in to her chest to start this high dose Cytoxin. We only had a 3 day window from when we were told it was going to start and actual surgery. So we were seen quick for her evaluation. It was so fast and she's had many surgeries - he came in and pretty much said "ok we're doing surgery - we're adding a second port line - then I don't want to see her anymore". He absolutely loves Haven and he reminds us that the less he sees her the better!
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The surgery waiting you know how many times we've seen this waiting room. Every single nurse and anesthesiologist knows Haven. She walks down the halls and everyone is all over her. She doesn't even hang out with us. Child life is always in this room and they take your child and play while you do those long boring talks with doctors.

Ready for surgery again. Haven is so awesome at this. Dad ready to take her in and put her on the operating table. I was very happy that the anesthesiologist is the same one we had in Feb. 2008 to remove her tumor. I really like him and he takes good care of Haven. I am very picky about our anesthesiologist and always put a 1st and 2nd request in and they always try to get who I want.

My baby after surgery. This was to insert the Hickman line in to her left chest - her cath-o-port is in her right chest. The tubes go up the jugular and down in the artery at the top of the heart.

Haven waking up in her room. I was actually shocked at how long we needed to keep the oxygen on this time. Haven is usually breathing without the oxygen within an hour of a procedure. This time she needed the oxygen for about 17 hours - every time we took it off she would drop to the low 80's.

I actually got very scared after this surgery - I know ROHHAD children do not handle anesthesia very well and if at all should be avoided. But we'd never had issues until this time. I even took video of Haven sleeping - the snoring was very familiar and brought chills to me. It sounded exactly the same as it did the night she had her seizure. I couldn't get the doctors on the isolation floor to listen to me so I emailed the videos to her Oncologist and he called me right away. He wasn't working today but would stop in to see her and would send our Endo over to see her. We even had her other 3 Oncologists show up and check on her.

Once she was stable from the surgery they had to perform some more tests of heart, breathing, and LOTS and LOTS of blood work. This is Haven enduring one of those many tests.

Some playtime. Haven had to go to the playroom for about 3 hours on the 2nd day in isolation. The nurses had one night with her and couldn't handle the sleep walking. She was connected to her machines all night receiving medication but they couldn't get her to stop sleep walking. She would punch and scream at them when they'd come in to change her line. So they ordered a special bed for Haven and I honestly wish we had something like this at home.

The net zips close and she becomes locked in to the bed while sleeping. Definitely helped with being able to relax and not worry she was going to jump out of bed and take off with all the wires connected to her.

As you can see - Haven didn't let the clowns in to her room. She made sure they stayed at the door. She is terrified of the clowns and they are always in Oncology.

Cleaning the Hickman line. The nurses had to go over this with us many times so we'd know how to do it when we took her home. I honestly wanted the line out. I was constantly begging for us to be able to get it out. Haven is also allergic to tape - so we had many issues with the tape sticking.

Finally I get to nap with my baby. Haven was always exhausted after receiving her chemo treatments.

As you can see we had to change out her bed. The bed they brought up didn't work with the nurses. They couldn't get to her lines because it zipped on the top. So they brought up a cage that had a double zipper and left the bottom open where they could change out her lines without waking her. Chemo was always around midnight and then she have a few hours each day of antibiotics. Every night after chemo Haven would have an intense headache and they would give her morphine for the headache.

After her first dose of Vancomycin Haven developed Red Man Syndrome. Which is a burning red rash on the face, neck, and body. Vancomycin is an extremely powerful antibiotic used to fight bacterial infections - but can be life-threatening for those with a low immune system.

About two days of Vancomycin later we were told that Haven had VRE - Vancomycin Resistant Enterococcus. Which is highly contagious and being on an isolation floor and your child having no immune system was a bad situation. Haven became even more isolated and wasn't allowed in the playroom until she tested negative.

Finally Haven was cleared and allowed in the playroom. This time Child Life came by and played with her for a long time. Haven learned to do puzzles and was doing them on her own after a few days.

About 3 weeks after our first dose of Hi CY Haven needed a blood transfusion. I REALLY don't like these. This bothers me more than chemo. This was to be a 4 hour dose but Haven only made it 2 hours before having a major reaction ending the transfusion and causing more and more blood tests.

This is Claire - one of Haven's favorite nurses. They would color pictures and draw together. She was also one of our favorite nurses. Just very sweet.

Haven wrapped up in her blanket from Grandma Sing. The Hi CY and antibiotics constantly made her cold. She'd have 3 - 4 blankets on at a time and the heater.

I'd say it took a little over a month after Hi CY before we started having issues. One morning when Haven woke up to the nurses in her room she saw all of her hair on her pillow and quickly pushed it to the floor. She tried to hide it from us as she didn't really think her hair would fall out.

Always exhausted. She just slept a lot. This is taken when we were quickly pushed out of the hospital. Our doctors kept saying they wanted her out of the hospital and in to the BMT housing ASAP or we'd risk more infections. I think we were about 2 - 3 days too late.

By the time this photo was taken at the BMT housing Haven had contracted with Clostridium difficile or C. Diff. This is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. We were on major isolation now. She wasn't allowed anywhere that other immune suppressed kids were. We had to keep her locked up in the house at all times and if she did come to clinic she had to immediately go to the isolation room - no stopping at the front desk.

This is Haven going to her labs. When staying at the BMT housing we had to be in clinic 3 days a week for labs. It definitely made for a nice drive since it's about 5 minutes away versus our hour drive from home. This was Haven's isolation room when in Oncology to do labs. Everyone had to wear the protective gear when coming in to see Haven because they could give it to the other kids if not careful.

Thanks to all my friends Haven received so many hats and scarves - the best were the ones she could decorate herself.

Oh this dang port line....we had issue after issue. The tape never stuck and we are only supposed to change it once a week and this was her tape after 12 hours. Not only didn't it stick but she had so many severe rashes. Air is not allowed to be on the port line - you have to cover it immediately after scrubbing. So Haven had many infections due to this line. It was constantly gooey and constantly burning her skin with a rash. Homecare was getting upset because I was going through so much tape and insurance only gives so much for supplies. They don't factor in that a person might be allergic and need a bit more.

Doing puzzles at the house. Haven is a pro at puzzles now. This was her first 300 pc and she always did them by herself.

Once Haven was cleared from C. Diff - which took about 5 weeks and lots of samples in to the hospital from me - she was able to start physical therapy. She loved it.

The first 500 pc puzzle - as you can see we had a lot of time locked in to a one bedroom apartment at the BMT housing.

Well......against the rules we took Haven out. We just kept it a secret. She couldn't be in the house anymore and if it was windy we always made sure she had her mask on . This was a little boat ride in the harbor.

Taking a walk on the board walk. I believe these were Haven's favorite times. She could go out in the sun and enjoy a different scenery.

My baby girl. I slept with Haven every night we were in the housing. Her sleep walking was horrendous and at least if I was there I'd feel her trying to climb over me. This was about 2 months after at the BMT housing - Haven was finally showing signs of improvement. We were slowly getting back to potty trained and knowing when she had to potty. Plus she was becoming loving and hugging a lot. I love it.

In the middle of August our friends in AZ held a fundraiser for Haven to help pay for her medical bills. The fundraiser was a mountain bike ride called "For Haven's Sake".

Haven with Malcome and Katie. Christian is in the back. All of these beautiful children live in the BMT housing together while going through heavy chemo. We had a great evening at Cold Stone - Haven had never been before.

Miss Haven doing her physical therapy workout!

Finally no winds and we're given the ok to take her outside - legally! :) She didn't have to wear the mask this time - only when the winds are blowing. She got to feed the ducks and go for a walk. Her favorite.

The next sleep study! This was also with additional wires to check for seizure activity during her sleep. I can say that Haven enjoyed this sleep study more than any of the other ones because she didn't have any hair to get messed up with the glue. Although I wish they didn't use a red marker! does she looked relaxed and ready to sleep! It takes about 2 hours to get all the wires on and patches. During this sleep study were finally able to distinguish her sleep patterns even more and found out that she only hits stage 1 of the sleep cycle. She never makes it to deep sleep. At the end of stage 1 her brain snaps back to the beginning of stage 1 and starts all over. So while her body is asleep her brain is not. Hence - major sleep walking issues because the brain wants to keep going and going. At this point her CO2 was marked at 50 (normal is around 45) but not a danger zone and her Pulmonary doctor was happy with the results.

Flushing the Hickman. This is required every day. You have to clean the tip and flush it to keep it open and unclogged. I just can't do this to my daughter - my mind won't let me. Dad took care of cleaning the line and flushing it each day. AND we finally found some tape that would stay on more than 24 hours!

Surgery again! Finally we were approved to have the Hickman removed! I was so excited to get this out. I just didn't like it and too many infections came with it. Haven met with her anesthesiologist and reviewed her paper work.

The doctor even had her sign her consent forms. They just love her here and she loves that they let her get so involved in everything relating to her. There is one thing highlighted in Haven's files - she is allergic to Ketamine. This is the anesthesia that caused her to have a seizure and go in to massive convulsions ultimately closing her airway and stopping her breathing in 2007 during an MRI. It is one of the most widely used anesthesia and we always make sure the doctors repeat back to us that it will not be used on her.

Here she is going down the hall to the operating room she has visited so many times before. This would mark her 5th surgery at Hopkins.

One last good bye before heading in to the OR. She had to give me the babies and we made sure they were there when she woke up.

Sending her off in to the hands of the doctors once again!

A much better wake up after surgery and look - she convinced her surgeon to give her the tube from her chest! He didn't want to but said he couldn't refuse her request! She was so happy to get this out of her.

Back to Oncology for more labs. Her other favorite nurse Katie!

Tubey - this is what she named it. We didn't leave him out of his case very long because he was a smelly thing!

Nurse Lauren on Haven's next lab adventure!

Building with dad. One of her favorites. She loves to make and build things. She probably knows all the tools.

Maryland Renaissance Fair.....yes I know we weren't supposed to take her but as long as we didn't say anything why not? I wanted her to have fun - she'd been locked up for months and not allowed to see her grandparents. This is Haven with Grandma B-Honey.

Back to Oncology! Yes it's a never-ending cycle...but I think the world of her doctors now. It has taken many years but I trust them and believe in them. They know my Havey and they take care of her. This is her normal port when accessed. It is only accessed like this with bandages when we have to do a day of chemo. Her chemo takes about 8 hours to administer. The other scar on her left is from the Hickman line.

This was a long meeting with Oncology. Haven was doing her chemo while we talked with the doctors. They had decided Haven needed another round of treatments requiring us to go back to the 8th floor isolation. The Hi CY was to hit 75% of the immune system and now we needed to hit the other 25%. This would be 3 days of High Dose Dexamethasone and 4 days of IVIG.

The next day we were camped out in isolation again. After all the infections she received on the initial isolation visit I was more prepared this time. I brought my only cleaning supplies and washed down every corner of this room before she came in. We were laughing too because it was the exact same room we were in for so many months this year. All her nurses were excited to see her and see her improvements. We didn't even need the cage for the bed this time.

Yes --- spoiled! She has her own computer and PS2 in her room in isolation! Don't worry - she doesn't hate being here. She is catered to by nurses that spoil her and has a computer at her side!

Beautiful sunset view from our room window! Hello Baltimore!

My baby girl after a dose of Dex. When she gets this she gets really bad dark circles around her eyes and I know she needs to sleep.

Another of her favorite nurses - Hatel. When she found out Haven was going to be there she requested to have her on the night shift. So she was Haven's nurse every night we were there. We stayed for about a week this time because of Haven's track record of being able to handle these high doses of medication.

More playing at the computer. She was definitely entertained. After about a week we were allowed to take our baby back home with us.

It's a long drive from the hospital to home for a child receiving chemo. She never makes it more than 15 minutes. The car always has a pillow and blanket for her.

We received a call from Make-A-Wish Foundation and they wanted to meet with Haven. We set it up for them to come out after her 2nd round of isolation. They hung out with Haven for a couple of hours and learned about her wish and what she liked.

Haven's other wish comes true - she gets a baby sister! We took her to pick out a baby girl and this is baby Nicodemus at 3 weeks old. The breeder let Haven come see them early because she'd never been around puppies.

Halloween....we were so worried with all the treatments and isolation that we weren't going to get to have Halloween this year. Haven really wanted to be a butterfly princess. Somehow I found an outfit and it actually fit!

Grandpa B-Honey's birthday -- Haven wanted to make him cupcakes. So we set out to make red velvet cupcakes with neon icing! They were YUMMY!

Back to IVIG - this is Haven after getting home from treatment. She is always so cold after IVIG. We hav to keep blankets on her and she usually sleeps for 2 days after treatment. Then she's back to herself like nothing ever happened.

Baby Nikki at 6 weeks old. We went back to check on her and see how she'd grown! Look at how big she is in just 3 weeks - Haven can barely hold her. We really enjoyed being this involved in the early puppy weeks.

In November Haven was approved to begin home schooling. She started with 3 days a week at 3 hours with her teacher. She was registered in to the school and the teacher came to the house and worked with her. Grades are turned in to keep her records up to date.

Making deviled eggs for Thanksgiving. Haven's favorite dish and we make it every year.

Thanksgiving dinner at Grandma and Grandpa's house. She's definitely gone through a lot of changes from just one year before.

Baby Nikki comes home. She was quick to become part of the family.

Snow day.....our first big snow since moving to MD. We were snowed in for the entire weekend!

Nikki gets a cool new jacket from Haven. She definitely wasn't a fan. But this is one of Haven's favorite pictures.

Making Christmas candy! We crushed up candy canes and poured melted chocolate on them! Haven had a blast!

Christmas Day at Grandma and Grandpa's...marking the end of one of the longest years we've had thus far! About 180 days in the hospital for 2009 and lots of treatments.


Anonymous said...

You are so inspiring!!! Haven is so lucky to have such wonderful parents like you too! God is watching over you guys. Never give up. Your love for her does not go unnoticed.

Anonymous said...

You are great parents. God bless Haven. She is so beautiful. <3. <3.

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