Sunday, March 30, 2008
Haven asked out of no where - while driving to Ohio.
Haven: Mom, will I ever see Kendall again?
Me: I'm sure you will baby
Haven: No, I mean, will she ever get to come to my house again?
Me: I'm sure you will see her.
Haven: I miss her and I want to see her. I can go to her house.
Me: I promise you will see her again. Ask your dad and I'm sure he will ask if she can come see you.
Haven: ok. Maybe I can text her.
Then the funny thing is a few minutes later I get a text from Kendall. It was almost like a connection there. I sent a text to Kris letting him know she had contacted me. He said he'd been texting with her all night. So I wrote back. Kendall told me she'd like to fly out this Summer. I told Haven and she was so excited. She wanted to know how Kendall knew to text me. I have no idea but it was very nice.
Once I have the schedule of her medicine and we know how she will be able to handle it I think the best thing to help her would be to see her sister again. It's been since Christmas and they used to see each other all the time.
Haven told me tonight that I have to teach her how to text and she needs her own Sidekick phone.
Haven, Grandpa and I took Great Grandma back to Ohio this weekend. We weren't supposed to leave until before dawn on Saturday morning but I was so irritated by phone calls on Friday. Probably 8 calls in 45 minutes from my father that I left work at 3pm and got home and packed by 4:30 and in the car by 5:15. I was set to induce pain on my father for the phone calls! :) The drive was long and dark and my grandma brought comic relief....or at least we used her for our comic relief.
We arrived in to Ohio around 3:30 am and woke up around 9am. I did not know everyone was going to have a cake for my birthday. I've kinda forgotten about my birthday this year - 33 isn't that necessary of a celebration anyway! ;)
My aunt has always called me lizard lips. So how fitting to have a lizard cake!
Waiting for someone to cut the cake! It was yummy too!
Deanna and Ashley. I haven't seen Deanna since Ashley was about 18 months. I remember her telling me "don't rush to have kids". Ashley is so adorable. And I enjoyed the political fight that engulfed the house within a matter of minutes. Reminds me of those memorable family moments! :) ha ha ha. Thanks Deanna and Nikki - it was fun to watch you two go at it!
Me, Deanna, and Tasha (nikki). All 3 of us in the same room smiling. We shared many memories with the family of our deviant behavior in High School and College times! :) It's so nice to be older and able to divulge the truth of the 3 girls they thought were so sweet and never did anything sneaky! Oh yea, Dad you really do suck at taking photos - I'll show you how to work the camera when I see you again.
My girl b-laxing in the car on the way back home from Ohio. We left at 3:30 pm and got back home around 1:30 am. Haven and I have literally slept all day and not gotten off the couches! I love those kind of Sundays. Ashley - thank you for the bunny!
My grandma's favorite game. She was on there with my mom and I for hours!
This has to be after the 1st hour. I was so tired near the end and it felt like I had done hundreds of sit-ups! I won the jackpot one time for getting over 500 points! :)
Since I never left skee ball I'm not really sure what games Haven played but she stayed with Kris and my dad all night. She had a blast. Never got scared but wouldn't give Chucky a hug.
She never looked at the camera for any pictures.
Putting the tickets in.
2 hours later and 3 adults that never left skee ball we had almost 1300 tickets. She got a bunch of trinket things and more junk to fill her backpack but I had fun! :)
Thursday, March 27, 2008
me to make sure we have read all of the side effects for each
medication and that we bring any and all questions with us at the April 4th
meeting. With very little options and the decision made for us. Below
are the side effects and statistics:
100% of children - fever, shaking chills, loss of white blood cells,
vomiting, loss of red blood cells, hair loss, high blood pressure,
excessive weight gain, inability to fight infections or disease,
abnormal hormone production
1 out of 5 children - bleeding of bladder, poor wound healing,
darkeningof skin, thinning skin, high risk of fractures due to decreased
calcium, damage to heart muscle, risk of heart failure, short of breath,
1 out of 25 children - blurred vision, heart damage, damage to lungs,
new cancer of Leukemia, damage to bladder, rapid heart rate, breathing
difficulty, severe headaches, damage to brain, fatal kidney failure,
rash causing loss of skin, hepatitus C, inflamed pancreas, stomach &
intestinal bleeding, slowed growth, ulcers, seizures, stroke or heart
attack, coma, death
We also have no guarantee anything will work and then maybe it will.
Who knows. All I can guarantee is that after April 7th the way you
know my child now will not be the same.
Tuesday, March 25, 2008
We finally received a phone call from Haven’s doctors regarding her status and treatments. They have been researching and working with doctors across the country for the past few weeks. Haven has not progressed forward as we had hoped and has actually regressed back to the old way. We had 3 weeks of perfect sleep, sweetness, refusing of food and then now we’re back to where we were.
We have an appointment on April 4th and 9:30am to discuss treatment and schedule and will begin soon after. They will shut down her immune system and start the steroids first and then move in to the chemo. The entire treatment is scheduled to last for 1 year. We will also be discussing the next MRI due in May. This will tell us if there is another tumor growing or if it has stopped.
I will be sure to let everyone know the outcome of the April 4th appointment.
Haven and I will be traveling to Ohio this weekend (28-30) to visit family there and to take Great Grandma back home. Then we will travel to Virginia on the weekend of April 4 – 6 to visit her grandparents there.
Love to all
Sunday, March 23, 2008
Other than the bunny's basket she received a basket from Grandma and Grandpa Virginia (left) and some Easter stuff from Grandpa Beard-off and Grandma Sing. The bunny dances and sings - I got to hear that all morning.
As Tovie got in trouble for being bad recently Haven has started taking care of a new animal. His name, yes she made it up, White Buns Magilicutty. The first time I heard his name was while she was on the phone with my aunt Candy. I could not stop laughing - she says it so clear and perfect.
She and grandpa for some reason also stand and walk the same. It's so funny to me.
Friday, March 14, 2008
1. By March 1st we have received over $70,000 in medical bills – most paid by insurance but not all of it
2. Haven has another possible tumor growing back and will start chemo in a few weeks if we can’t hold them off
3. Kris has stage 1 hypertension – we’re getting this checked next week
4. I’m being checked today for a lump in my breast and endometriosis
5. An ex-wife (not mine) who, bless her selfish heart, decided on the day of Haven’s surgery that she would re-open the child support case and take us back in for more money. I think I forgot to say thank you – I didn’t have anything else going on this year! Not enough drama in CA!
6. Living in a state that is more expensive than CA! Yea my living quarters are cheaper but my electric went from $70 a month to over $450.00 for February
7. We spend over $500 a month in gas driving back and forth to Johns Hopkins
8. Kris can’t work – Haven needs 24 hour care by someone who knows her medical condition
9. I’m required to work and use it as my sanctuary (Kris is definitely stronger than me with dealing with this)
10. Haven no longer sleeps peacefully at night – last night I was kicked, pinched, and yelled at between the hours of 1am and 4am
Those are just my top 10 stresses so far. I know I’m pretty good at hiding everything I feel with a straight face – Kris also keeps it all bottled up inside. But lately I’ve started having my breakdowns. It’s random and it’s usually about the stupidest things. It’s just everything all at once. I start feeling as no one really understands what my daughter and we are going through. No one else lives it every day. Everyone looks at her and thinks she’s just normal but she’s not. I warned everyone a few weeks ago that she can be difficult but she doesn’t mean it. You need a tough skin in my house – we don’t handle sensitive types to well! :)
I have been told that maybe I need to go to therapy or maybe I should talk to a counselor or maybe I should be treated for depression. Well all of that may be true – but considering I have so much “free” time I don’t know where I could fit that in my schedule. I’m out of work so much it takes ½ a day to figure out what I was last working on when I do get back in.
How are we so strong? We’ve become robots. I feel like that donut commercial where you wake up, do your day, go to bed, wake up, do your day, go to bed…..just fumble through it.
I get emails that say – “we’re so happy Haven is getting better” – ummm….I’m confused because I don’t remember ever saying that and maybe someone knows something I don’t but she is not better. Considering something is growing back and we’ve had no other changes from the surgery – I’d say she’s worse off than she was before. Then I have emails that say – “everything is going to work out” – how do you know that? I don’t know that – Kris doesn’t know that. The doctors even say they don’t know that. If the higher beings helped her make it through surgery – WHY did they give it to her in the first place? Why do they give it to any child? It doesn’t make us stronger – it doesn’t help our faith – What is the plan when you give a child cancer? There was no miracle on the surgery – we just had a good surgeon who has done many surgeries. We had a great anesthesiologist. We have great Oncologists. They went to school for about 15 years and then worked their way up to get where they are. It was not a miracle to us. Just great doctors that do a lot of research and bring it to us. If my daughter dies – everyone will move on – we will not. I am about 99% sure that after April 4th my daughter will never be the same – this is the last that anyone who has loved her will know her as she is. She has had no changes for the good since surgery so we will have a difficult time fighting against her getting chemo.
Anyway, this is my therapy session as best as I have time for.
Tuesday, March 11, 2008
I love the colorful picture of you & Haven & the Easter eggs!!! You both have such beautiful smiles! And, thank you so much for the video clip of Haven & Tovie!! A video is like a mini visit, especially since we are so far away . Thinking of you guys every day. Keep in touch! Love & hugs, Dottie
Thank you Misty & Kris HAVEN is always in my prayers . Thanks for the update. GOD BLESS,and take care .MUCH LOVE GG. -- Grandma Bist
This is Cousin Bill in California. I just wanted to let you know that we are praying and keeping you in the forefront of our minds all the time. I don’t know the outcome of today yet but I feel that it’s going to be very positive. We love you Bill, Stephanie, and Amelia
Misty! I can’t believe all of this. I knew she was going thru a lot including surgery but when you put it all on paper it just seems so unreal. I can’t imagine any of it. You’re so strong thru your words. You would have to be a strong individual to go thru what your going thru. There is a saying what doesn’t kill us will make us stronger. -- Hayley Kegley
Poor little Haven!! She is so brave to be going through all of this. You all are always in my thoughts! Let's hurry and get past this and get on with life!!! I love you all and miss you tons! --AliKat
Hi Guys this is Alan and Kayvron (Jeannie's brother) just wanted to let you know our thoughts and prayers are with you each day as are those of our family members. We do believe all will work for the best.
Hey there everyone, Just checking in to see how you are doing. I am really glad that surgery went well. I am sorry that I couldn't come up to see Haven when I was at the hospital. I was in clinicals for school. Dr. Cooper and I are thinking about you all and just wanted to touch base with you. Call us if there is anything that we can do.Give Haven a BIG SQUEEZE!!!!! Dawn -- Haven's pediatric nurse
Saturday, March 8, 2008
Everyone doing puzzles. Haven loves to do puzzles.
It was also Mike's birthday. So we had some cake and some presents to play with.
You can see how beautiful the day was. Haven and Stryder were outside playing just a few minutes before. The weather can change so fast.
We colored some eggs today. I'm sure we'll do it again before Easter but Haven has been begging to color eggs.
Dusty helping Haven make her eggs.
We had a lot of fun today. We started with 18 eggs and 2 didn't make it. But she had a lot to color.
Haven had so much fun making eggs. She loves to create and make everything.
Stryder watches his big cousin - I didn't need egg color on the walls so we kept him away!
My dad tries to get creative and this is a close up of the sprinkled eggs
Stryder heads to Grandpa's.....his raincoat is sooooo cute!
Uncle Kris takes him over to Grandpa's. The backyard is pretty much a swamp right now!
Such focus. She made a few dozen. You can not "mud" them as long and they are squishy and have goo to "pop" out! I was hit with some goo unexpectedly.
My mom's boss gave Haven this present. It's awesome!
Friday, March 7, 2008
Wednesday, March 5, 2008
We had Haven’s MRI on Monday. We left the house at 9am and were there until 4pm. Scanning started at 11am and as Haven would have it her recovery from anesthesia was minimal. She woke up immediately and wanted to go home. She was able to help take all the stickies off and she cleaned and closed up her port. Band aids and stickers and we were out of there! Nothing like another 6 hour day in the hospital basement! At least nothing happened this time.
Tuesday we left early and headed out to Oncology for a review of the MRI from Monday. What we got was news that was totally unexpected and didn’t even think we’d hear.
Brain, Pelvis, and Chest MRI’s showed clear and perfect. Nothing going on and everything looks good.
Abdomen – there is something that has grown back in the spot where the tumor was.
Our Oncology doctors of course called Haven’s surgeon in and he insists over and over that there is no way and he got all of the tumor out. It seems as though something has started to grow there again but of course they aren’t too sure of it yet. Our doctors do not like to rush in to anything without all of the details – which is good. However, there is something there and they aren’t sure exactly what it is. We are now scheduled in 2 months to have a follow up MRI of the abdomen to see if it is growing or changing. At that point we will need to discuss surgery again or chemo. We would chose surgery first, however, we need to make sure it’s not too much stress on Haven’s body and it’s actually going to work. We were not expecting this at all.
Our next round of bad news came right after the MRI results. Haven has 3 other syndromes as we’ve discussed before: Hypothalamic Dysfunction, Paraneoplastic Syndrome, and a type of Opsoclonus Myoclonus. There have been small changes in Haven – such as – not yelling and being more polite (although has to be reminded to be nice). She is trying to potty on the toilet but not getting there in time. She still asks for food all the time but not as bad. These changes are not enough and are not quick enough. She did gain 2 lbs since her Feb. 15th visit – which is NOT good. She did sleep very well for the first 3 weeks after surgery but has started talking and sitting up in her sleep again. Note – we have not slept well for 3 nights now! Due to her not having as quick of a change we were given a bulk of mind boggling information.
In 2 weeks I will receive a phone call from her doctor to review any changes that may have occurred – good or bad. If there are no changes we will meet again in 2 weeks to discuss her treatment. Kris and I were given a one year treatment schedule for Haven. Please note this treatment does not do anything to her Neuroblastoma cancer – it’s only for the other syndromes. Treatment for the cancer will be in addition to.
One year schedule of medication and SOME side effects (I will not share all of them – only most common):
Cyclophosphamide: this is the chemo she will receive. This will be taken monthly. Side effects: Vomiting, decrease in red and white blood cells and platelets, hair loss, decrease ability to fight infections, bleeding/inflammation of the bladder (must drink constantly to not build up)
Intravenous Gammaglobulin (IVIG): Immuno-suppressant drug. This will be taken monthly. Side effects: Increase in blood pressure, fatigue, fever, chills, joint pain, vomiting, pain in infusion area, abdominal pain, allergic reaction causing shortness of breath, meningitis symptoms (inflammation of brain, pain in neck, severe headaches). This drug is a product made from human blood.
Prednisone: Steroid taken 3 days a week for 1 year. Side effects: Overeating, high weight gain, high blood pressure, high risk of diabetes while on medication – will need insulin, severe personality changes, abnormal hormone production, muscle weakness, slowed growth, poor wound healing, stretch marks, possible bone breakdown.
Rituximab: Immuno-suppressant. Taken monthly. Will need to be admitted to hospital for over night every month while taking this. Side effects: Nausea, fever, shaking chills, decrease in white blood cells causing high risk of infection by bacteria, virus, and fungus, vomiting, headaches, short of breath, possible allergic reaction causing fluid build up under the skin-lining of intestines-swelling of tongue or throat, abdominal pain, increase in blood pressure, irregular heart beat during infusion, diarrhea, dizziness, low red blood cells (causing you to be tired and weak), low platelets (causing you to bruise and bleed easily)
Again these medications are only for the syndromes NOT cancer. That will be a different treatment. Medications all have to be administered on different days as each takes about 4 hours to do plus set up and take down time.
One of the many great things about Haven is how well she is handling everything so far. You should’ve seen her taking care of her own port yesterday. She freaks when she sees the Huber needle (butterfly thing) – it’s scary big and curved at the end. But once it was put in she did the flushing, put all 3 viles on to take her blood (freaked us out – I couldn’t watch her do it), then reflushed her port and put the Heparin in to close it up. Amazing. Then she got her band aid and was happy. Telling everyone she did her own port.
Anyway, this is our latest update. We’re tired and exhausted from thinking about it. Thanks for taking the time to read about her. We appreciate everyone’s thoughts for her.
More and more learning!
Grandma and Haven made pumpkin muffins one night. They were DELICIOUS!
Haven had a blast making these - I had a blast eating them!
Yes....I painted another room. But it didn't stay like this!