This site is from a parents perspective. All information
has been found through personal research or personal
experiences and is not intended for medical purposes.
As always, one should seek the advice of a doctor or in this case,
a vascular anomalies specialist.
Posting pictures of my only daughter was a hard decision for me. I am by no means ashamed of her and I think she's absolutely adorable, but want to protect her at the same time. Unfortunately, their are some that may not think that. Our family has had our share of rude and insensitive comments, obvious stares and so on. It is my hope that this website will change and educate the general publics attitude, help educate them on this medical condition and bring about more understanding.
Click here for photos ... Danielle's Hemangiomas Growing
Click here for photos ... Danielle's Hemangiomas Involuting (Shrinking)
Click here for photos ... Danielle's Hemangiomas Are All Gone!
Well, now that we know how to say it...what exactly is it? Let's start from the beginning and you can learn as we did. In my research, I found it extremely helpful to hear and read about other children with hemangiomas. This site is dedicated to my daughter Danielle, who was born with two life threatening compound hemangiomas. If not for her, this site would not exist. It is our hope that this site will educate the general public and also help give insight to families searching for information regarding hemangiomas, and lastly, offer a parental perspective opposed to a clinical one. Pay special attention to dates, as that helps one realize how quickly these vascular tumors can grow, and how important early intergression is, if needed.
5/99- Two days after my beautiful baby girl was born I noticed two white blanched spots. One on the side of her jaw, and another in the middle of her neck. The white spots turned to a dark red color. Our pediatrician, Dr. Andrew Gellady said they looked like port wine birthmarks and he would keep an eye on them.
6/26/99- At 5 wks of age, a small bump started forming where the red birthmark on her jaw was. It measured 5 x 4 cm. I will never forget this day as long as I live. Danielle's pediatrician suspected it was a tumor, probably a hemangioma; But I don't think I comprehended much after the word "tumor".
6/29/99- We went for a CT scan to confirm diagnosis. The good news......it was a noncancerous tumor called a hemangioma. The bad news, I was told it could get very large, not very pretty to look at, but to leave it alone and it will go away on it's own.. Within seconds, I found myself crying...one out of relief it wasn't cancer, then from a sense of loss for my daughter. You bring home a picture perfect baby and want the best for her and now I was being told she was going to have a grossly disfiguring growth that was deep red on the side of her face till she was at least 5 or 6. I was told they usually stop growing after the first year, and would then start shrinking and that it was better off left alone, since it would eventually go away. But, at that moment, all I could think about were images of children making fun of my baby, and how would people react, how was I going to shield her from that, etc....it was a mirade of emotions.
7/6/99-. Within 1 wk, we were back at the pediatricians office, now Danielle's neck was starting to develop a bump. It was another compound hemangioma! Not another one!!!! Her facial (parotid) hemangioma measured 6 1/2 x 5 1/2 cms, her neck (sternal notch) hemangioma measured 2 x 2 cms.
7/8/99- The ENT dr. we visited viewed the CT film and said her hearing wasn't endanger at *this* point in time, but could be. He would rather give her a trache than surgery to remove the tumor on her neck, if breathing becomes labored. Said steroids to shrink the tumors only work in 35% and that he advised no treatment at this time, but both tumors warranted monitoring. He wanted a re-check in 2 months. At the end of the visit, I asked how many cases like my daughters he has seen......his answer, about 1case per year!!!!!!!!!! Well.......based on that, I decided it was time I armed myself with some background on what my daughter had.....I wanted to know every detail I could find about Hemangiomas, as I was starting to get the feeling that Danielle's hemangiomas were above and beyond the average type that you can just let regress all on their own without complications. Now I was concerned for her hearing and breathing. I started saying more prayers than usual at this point.
7/10/99- The search began......the library, magazines, medical books and the internet. Anything and everything I found regarding hemangiomas, I printed or copied, and above all else, I learned! This was my way of helping the feelings of helplessness. More knowledge helped me understand Danielle's condition and her options. Danielle's hemangioma file is over 7 inches thick to date! I found a Vascular Anomalies Specialist (VAS) out of state and emailed him Danielle's history w/pictures, Dr. Milton Waner.
7/12/99- Dr. Waner; emailed me back, gave me his home phone number, said to call him and to send Danielle's CT film to him before deciding if treatment was appropriate for Dani. I couldn't believe a dr. actually gave out his home number anymore, that's almost unheard of in this day and age, and then I was concerned at how quickly I got a response back. This must be serious?! /font>
7/20/99- Danielles tumor were growing rapidly, they now measure- Parotid- 8 1/2 x 9 cms, sternal- 9 cms wide.
7-21-99 Spoke to Dr. Waner after he reviewed Danielles CT and pictures. Hes very concerned at how large the two hemangiomas are. He feels she is at risk for "high cardiac output failure" He said that so much blood is being shunted to those areas it makes her heart have to work harder to keep up. Said she needs to be on steroids ASAP to try and shrink the tumors, or at least stop the growth. 2 mg. to start isnt enough due to the size of these. Needs 4 - 5 mgs./per body weight. **Have Dr. Gellady call him Friday** Dr. Waner will call him at home if needed. Other concerns: the parotid tumor can also push her jaw bone forward. Parotid hemangiomas do not involute (shrink) well and will definitely need surgery eventually. In my home state their are only two Drs. he knows of that have experience in treating these w/steroids. He gave me their names. He will check to see if their is anyone else in our area. Will have to delay her vaccinations while on the prednisone (steroids) but she can receive certain ones. She has to be monitored weekly while shes on the prednisone. He needs more pictures of Danielle showing the tumors better. I completely "lost it" after getting off the phone.....High Cardiac Output Failure......aka.....heart attack??!!! To say we were worried is an understatement. Kept trying to remind myself that worrying accomplishes nothing. I had our church put Danielle on their prayer list after this conversation & kept reminding myself to trust in the Lord.
7/23/99- Pediatrician appt.- Our pediatrician showed great concern upon seeing her. I felt he was taken back at how much it had grown in so short a time, (2 wks since last visit). My husband swears our pediatricians mouth literally dropped open, upon seeing Dani. I told the ped. about the discussion w/Dr. Waner ...Thankfully, our ped. supports and agrees she needs treatment, that these tumors are not the typical hemangiomas that can be left alone to involute. And agrees she should start steroids. Overheard him say her heart rate was 150 at rest?!!! Hes also going to try and find a dermatologist or ENT within our state who knows more about these.Given her immunization shots that were due. Am grateful and thankful that our PCP (primary care physician) supports us. To a degree, relief floods in.
Parotid measures: 8 1/2 x 8 1/2 cm Sternal/neck measures: 6 1/2 x 5 cm *measuring it from different angles now
7-23-99 Danielle starts receiving
Prednisone (steroids) and Zantac (for help w/the side effects of the steroids). Starting
at 4.5 mgs. Ped. wants her to get an MRI.
Side effects of prednisone : can stunt growth, moon face, high blood pressure, upset stomach, acid reflux, heartburn. The zantac is to help w/the reflux and heartburn side effects. He also wants us to see another ENT. He wants an MRI and an ultrasound to make sure their are no more tumors internally. Decided against the MRI, doing a CT again to avoid general anesthesia.
7-28-99 1st visit with second ENT dr. we will call her Dr. Giannia. Within 5 minutes of discussion, I was extremely pleased to find she had more experience and knowledge regarding hemangioma management. Dr. Giannoni put Danielle on Propulsid cause of the foaming bubbles shes making and the throwing up. NO ANTIBIOTICS while shes on this! Given Nystatin creme for her neck, it has become completely raw. In extreme amount of pain, its broken open all in the crease of her neck. Open wound that no matter what we put on it, or how dry we try to keep it, will not heal. Danielle is constantly crying and pulling on her neck. Can barely put her down, always holding her to try and calm her. Odor is horrendous. Dr. Giannoni believes she may need laser surgery if we cant get this wound healed up. Shes hoping the steroids shrink the strawberry aspect of the hemangioma as well, because her neck cannot be left to ulcerate more. Also, every time her neck ulcerates and breaks open it causes permanent scarring. Dr. Giannoni took pictures to better monitor if theirs any shrinkage. Wants a re-check in 3 wks and then will try wean her off of the steroids (8 - 12 wks), or put her on alpha interferon if the steroids dont help much. Report any black and blue marks immediately, as shes at risk to developing a blood platelet syndrome caused by the hemangiomas called "Kashbach Merritt Syndrome". Heart and breathing problems would be gradual, not overnight, so monitor those as well. To try and heal her neck...after Nystatins used up, use Neosporin, and possibly put gauze on it. Viewed her 4 wk CT scan with Dr. Giannoni;. Her parotid hemangioma surrounds her main facial nerve. Hearing was tested, so far okay..but ear canal is closed. Throat is clear on visual examination. Dr. Giannoni feels Danielles case is on the extreme end because of the sizes of these hemangiomas. At risk for cardiac failure, or "beard effect" where the tumors grow together, like a beard does, which can lead to breathing problems. More worries, more prayers.
7-29-99 Sent for CT and Ultrasound. Put through all day ordeal, Chief Anesthesiologist was afraid to put her under any anesthesia, the size of these tumors actually scare doctors upon visual inspection, he said the anesthesia could relaxes her vocal cords and she may stop breathing if the tumor is pressing on her vocal cords. Had me call my ped. and Dr. Giannoni for their opinions. Made me sign a release before they would go forward. Took them over an hour to get an IV into her arm since the veins are so small and shes so chubby from the steroids. She hadnt eaten for over 8 hours prior, hospital policy. She was famished, since the steroids make her appetite increase. She was hysterical by the time all the Drs. told me their reasons they were afraid to put her under. I talked to Dr. Giannoni, she said to do it, that we had to know how big the tumors were, and how deep. I agreed to the general anesthesia so that she wouldnt have to go through all this again in another week (the fasting, IV etc.) My exact words were "Do it before I change my mind again." They decided to put her under general anesthesia since its easier to get a child to wake up quicker. They did another CT scan. SHOULDVE done the MRI since that's what my pediatrician. wanted in the first place, but decided to avoid it so she wouldnt have to be put under a general. So she ended up being put under a general, and still didnt get the MRI. Came out of the general okay, Thank God. Results being sent to pediatrician. Ultrasound clear, not showing any internal signs of more tumors, concerned though, because from my research, it said they can only be detected from MRI??
8-15-99 Pediatrician gave me a prescription for Domeboro solution for her neck. A drying solution, clean with this 2xs daily, then blow neck dry with hair dryer. This was so painful for Danielle...even water hitting the open sore seemed like torture. Have to leave the Domeboro compress on for 20 mins. She screams and screams when I dry it with the blow dryer. By the end of this, Im usually in tears. My mother moved in with us, to help me care for Danielle. She hardly sleeps, and if she does it for no more than 2 hours at a time, sometimes less. When shes awake, shes usually crying. Shes in persistent pain since her neck ulcerated, and miserable from the steroid side effects. She was taken off the propulsid.
8-18-99 Dr. Giannoni rechecked her. She feels Danielle is responding well to the steroids, and that theyve shrunk by 50% , so no need for alpha interferon, but to be prepared for it to grow back. The hemangiomas usually start growing back once the Prednisone is weaned. Notify her the minute I think its growing it again. Measure it 2 xs a week myself so they can put her back on the steroids when it starts growing. Try alternating the Nystatin with Neosporin, and for her sides of her neck, try baby powder to help reduce further breakdown. No air is getting to her neck, the tumors are so large. Dr. Giannoni said if we cant get the macerated area on her neck to heal, laser surgery may have to be done. More pictures taken. Recheck in 2 wks on 9-1-99.
8-20-99 Parotid measures: 6 cm Sternal measures: 5 1/2 cm (just bump, not red)
8-23-99 Pediatrician appt- They're getting a little bigger. Staying on the steroids, but decreasing the dosage slower. Parotid: 7 cm, Sternal/neck: 6 cms
9-1-99 Dr. Giannoni's check up. Took more pics, viewed x rays of CT and ultrasound. Said we can try a 50/50 solution of water and peroxide on neck. She said if it rebounds to up the does of steroids back up to 4.5 mg.
9-1-99 Dr. Waner called. He reviewed her pics and wanted to see how she was doing. Dr. Waner is a God send! Said to call him if it rebounds to figure out the correct dosage cause he doesnt want her up to the 4.5 mg/2x day due to her weight gain. Said shes gaining too much weight to quickly and to stretch out her feedings to every 3 hrs. If she shows any signs of a cold to call pediatrician immediately, no matter time of day as she has little immune system while on the steroids. We avoid people whenever possible, no large crowds, wash hands frequently. If anyone gets sick in the house, they should leave the house till well again. He said asthmatic kids on this dosage can get sleep apnea (unsure if that meant Danielle can too?!) On her neck, she said to try Bactroban, or even Destine. He felt the peroxide soln, even a 25/75 mix would burn too much. Said to call him if it rebounds, or have my pediatrician. call him. Doesnt feel its necessary at this point, to bring Danielle out to to see him, he feels her current Drs. can handle the steroid management fine from here.
9-5-99 Parotid measures: 6 cm Sternal measures: 6 cm
9-22-99 Dosage now 1 mg. in a.m and p.m. have been lowering it by .5 mg every 3 -5 days, because an infant can go into adrenal failure if weaned to soon.
10-12-99 Parotid measures: 6 1/2 cm Sternal measures: 5 cm
10-14-99 Thank the Lord, Dani's off the steroids! We looked at this as a need reprieve. We were told it would probably rebound, so we tried hard not to get our hopes up. I dread Dani having to go back on it though. Note: 1st dose ran: 7/23/99 to 10/14/99 approx. 3 mos.
10-31-99 Two weeks and it's growing again!!!!!!! Parotid measured 8 1/2 cms. Cheek and neck are macerated, cannot get the to heal.
11-1-99 Pediatrician measured them again. Definitely growing again, they are as big as they were before. Parotid measures: 8 1/2 to 9 cms. Has grown 2 cms in 2 weeks! He will call Dr. Waner. Gave her more immunization shots. Checked her heart - 145. Discussed alpha interferon. Will call in 1 wk about treatment from here.
11-5-99 Parotid measures: 8 1/2 cm Sternal/neck measures: 9 cms
12-7-99 Off steroids still. Neck still painful, still pulling on it, cries often. Red strawberry aspect looks like its growing. Pediatrician still hasnt reached Dr. Waner to see if she should go back on steroids or not (Dr. Waner was out of the country).
12-13-99 Im totally frustrated about Danielle's neck. Shes in pain all the time, scratching and clawing at it. Called Dr. Giannoni and explained something has to be done, that Danielle and I both can't take it anymore. It had been 5 months of extreme pain due to her ulcerated neck. Dr. Giannoni agreed....Appt. tomorrow.
12-14-99 Dr. Giannoni was able to see 1st hand how Danielle acts when her neck is really bothering her, how agitated and painful it seems to her. Scheduled laser surgery for Fri 12/17 in hopes some scar tissue will built up to stop it from breaking down and staying broken open. If in 1 wk checkup , if its good, then possibly another laser surgery. Then she needs to be put back on the Prednisone because the hemangioma on her neck is growing bigger and bigger, and the red strawberry veins are growing/spreading.
Parotid measures: 9 cms Sternal/neck measures: 14 cms (including all the red) Largest it's ever been.
12-15-99 Talked to Dr. Waner- he agreed w/dosage and told him about the laser. he said, Danielles pain could also be caused by the tumors themselves. That the tumors are known to throb and to be forewarned that laser can have the opposite effect sometimes, it can cause more breakdown.
12-17-99 Laser surgery was done by Dr. Giannoni. Did outer edges to prevent growth and in the crease of her neck to try and stop if from macerating. Vomited quite a bit from the anesthesia. Given Tylenol w/codeine to give her for the pain in the next few days. Wednesday she wants to start the steroids again.
12-22-99 pediatrician says she definitely needs to be put back on the steroids. Tumors larger but have to wait till shes better because right now she has a bronchial infection and ear infection in her Left ear. Cannot tell if she has on in her right, as her ear canal has collapsed from the size of the hemangioma. . Discussed interferon- we both think steroid are worth trying again as it slowed down, and even shrunk them last time; But as parents, it's hard for us, knowing she has to take medicine that makes her sick, the ultimate goal to make her better. No parent likes to see their child in pain :(
12-26-99 Dr. Giannoni's post op visit. Said the laser surgery was successful, it didnt lacerate it even more and it cauterized the areas that were broken open. It looks to have stopped the red areas from spreading as well! Danielle is still bothered greatly by her neck, but its not the excrutiating pain she was in when it was broken completely open in the crease. Her ears were checks too. No liquid in them, ear infection gone. The ear canal is still closed, hoping it will open again, will need monitored. Her speech hopefully will not be affected as long as her left ear is hearing. A resident said their is a slim chance surgery may still be needed on her ear canal if it doesnt re open on its own. Recheck in 1 month.
STEROIDS - 2ND DOSE
12-29-99 pediatrician- overall check up on ears & bronchial infection in chest. Ear canal still closed. Bronchial infection cleared.
1-5-00 Parotid measures: 6 cm Sternal measures: 7 1/2 cm
1-12-00 Per pediatrician..cutting dose of steroids down quick as her blood pressure s/b 80/60 and it is 150/100. He's very concerned, were overwrought with worry. With the help of our church we organized a mass mailing to the Carmelite convents through the U.S. in which they remembered Danielle in prayer.
1-19-00 blood pressure still elevated. 140/100??? I thought he said. Parotid measures: 6 1/2 cm Sternal measures: 6 cm. Dropping dosage small amt ever 3 days.
2-16-00 Stopping the prednisone, no more steroids, due to her elevated blood pressure, to dangerous. Suggested we visit a cancer Dr. regarding Interferon Alpha.
2-18-00 Parotid measures: 8 cm Sternal measures: 8 x 4 cm
2-19-00 Parotid measures: 8 cm Seems to be getting bright red...My imagination?? Sternal measures: 10 x 3 1/2 cm
2-23-00 Parotid measures: 9 cm Sternal measures: 10 1/2 x 4 cm Growing
2-28-00 Parotid measures: 10 cm Sternal measures: 11 x 4.5 cm GROWING RAPIDLY
2-28-00 Spoke to "Dr. Giannoni", she thinks we should consult an oncologist, as hes an expert in the drug, although not hemangiomas. She said to get the consult now, because if they start rebounding extremely fast, their wont be time for a consult, shell need to be put on it immediately. Her opinion is to put her on the interferon, since the steroids are raising her blood pressure too high.
MAJOR CONCERNS/SIDE EFFECTS
1. permanent side effect- Spastic Dysplasia (leg shakes) which effects her nervous system, therefore she would need to have an initial neurological exam then see a neurologist every wk. Neurological damage. Must have monitoring to prevent!
2. White blood cells- lowers immune system- Once a week blood levels would need to be checked by ped. or hematologist can report values to her.
3. Everyone that goes on it, their liver works harder, needs to be monitored closely as it works 2 -3 xs harder, so it if gets bad enough, we would have to take her off of it.
The interferon is very serious and used less often, but used when steroids are no longer effective. Said she would be on it for 6 -9 mos, its injected into her arms and thighs, it will lower her immune system, their is usually some pain/bruising at injection sites treated w/Tylenol or Motrin. Also said interferon lowers inflammation, and fights formation of scar tissue, lowers scar tissue levels. If we put her on the interferon, she would like to see her every 3 - 6 wks.
2-29-00 Oncologist appt. to learn more about the alpha interferon they want to put Danielle on. Its used in cancer patients, therefore were seeing an oncologist. He advised us to put her on the drug, he wasnt worried about side effects. Not very informative. I had 6 pages on interferon and side effects, had questions for him and he understated each and every concern. Said he has put babies on interferon before, not concerned or alarmed by it. Said if it was his daughter hed put her on it. Thought we were overly concerned. Did blood tests (PT, PPT, CBC), all ok except her blood clotting factor is low, should I be worried by this as well???. Alternative is embolization. Asked how many infants has he puts on interferon- 12 -15/yr. I failed to ask if all these infants had hemangiomas or cancer.
3-4-00 Parotid measures: 9.5 cm Sternal measures: 9 x 3 (protruding) cm
3-7-00 Dr. Waner's nurse called us to relay his wishes....no interferon, only if it becomes life threatening where shes displaying warning signs of cardiac failure, or if she develops Kassbach Merritt Syndrome, or her bloods not clotting..
Perm. side effects she stated:
Spastic Dysplasia - 20% that's 1 in 5 children will be effected, and its irreversible, and it can be in any degree from mild leg shakes to crippling to the point of confinement to a wheel chair. DO NOT put her on unless IMMEDIATE life threat.
3-9-00 Spoke to Dr. Waner. No to putting her back on the steroids since her blood pressure sky rocketed, and no to the interferon since no signs of cardiac arrest. The side effects to interferon are very dangerous-near side effects, permanent spastic dysplasis (legs shake), could even be bound to wheel chair in some cases. Risk is not worth it right now, ride it out and see if the hemangiomas start involuting since shes close to 1 yr old.
Signs to look for if her heart is overworking: Fatigue, loss of appetite, blood pressure, lethargic, out of breath. Regarding Dani developing KMS- he said it probably would have already happened if it was going too. Whew, that was a relief! Parotid measured: 10 1/2 cms
3-25-00 Parotid measures: 8 1/2 cm Sternal/neck measures: 9 x 2 cm
8-29-00 Dani's pediatrician is unsure where to go from here, wants me to contact Dr. Waner Unsure as to weather Danielle will catch up in her growth. She's only in the 5 - 10 percentile for her age. Danielle is the first infant hes ever put on that large a dose of steroids. Said to ask Dr. Waner his opinion, based on the experience he has. I must say, Danielle's pediatrician has been wonderful, he has worked with Danielle's ENT dr. and her Vascular Anomalies Specialist since the beginning. He has been frank when he doesn't know the answer, and seeks the information he needs. It's been a true learning experience for all of us. I must say, all three of Danielles doctors have given Danielle excellent care. I would recommend any of them in an instant.
9-7-00 Spoke to Dr. Waner. He feels a consult is in order now. He needs to see her to evaluate her. Said her tumors will not resolve by school age, and more impt. hes worried about her heart enlarging over time, since the tumors are so large. He needs to know how old her last CT scan is, and how much, if any, the lesions have involuted, and how long she was on prednisone (total wks), and how big did the tumors grow since her last CT Scan. Surgery at any age has the same risks he said BUT that the surgery becomes easier when its smaller. They can embolize the tumors making it easier for him. A pediatric intervention radiologist would do the embolization 24 hrs prior to surgical excision. It doesnt worry him, very confident. He ruled out any team, even cranio-facial team to do the operations, he said Danielle needs a vascular anomalies team that is used to treating and surgically removing them. They must have experience to avoid permanent paralysis, since she has a parotid Hemangioma, which is a major risk with these type of tumors. He knows its far for us to travel for just a consult but needs to see her now in order to properly assess if surgery is required now or later. Need to get a referral from my ped., and if I need his help in stating his experience, or calling anyone, to let him know. Dr. Waner even said he would not charge us the consult fee if the insurance company wouldn't give us the referral. Dr. Waner amazes me every time I speak to him. I truly feel he is a gift from God in the way he cares so much for his patients. He goes above and beyond what is expected. He has guided us for over a year in Danielle's treatment without receiving one penny....I can't say enough how thankful for him.
9-11-00 No x ray is to be done since she isn't showing any signs of cardiac arrest. This concerns me, we're waiting for her to show signs rather than take a simple x-ray to rule it out?!?
9-13-00 Faxed Dr. Giannoni, Danielle's ENT specialist and asked her if she would write a letter of referral for Danielle to go see Dr. Waner out of state. My pediatrician and I thought this would be a good idea since it is hard to get approved for out of network Drs. Dr. Giannoni agreed quite heartily. Again, I can't stress how wonderful Dani's Drs. have been. Dr. Giannoni has always shown great concern for Danielle and within a week I had the letter in hand :-) And our HMO approved 3 visits to see Dr. Waner! I truly felt God answered our prayers to the approval. I was being told by many Drs, nurses and friends that it's extremely hard to get out of network approval. We got it, and I thank the Lord for his intercession.
9-21-00 Parotid measures: 7 x 7.5 (vert) cm Sternal measures: 12 x 7 (vert) cm 2 1/2 cm thickness, sagging but still protruding . Very hard to measure accurately now. Hemangiomas are definitely involuting now...very soft to touch, grayish color rather than bluish hue, visibly sagging, no longer hard to touch.
11/00 We will be flying to see Dr. Waner this month. I'm confident Dr. Waner can help Danielle but my husband and I have already decided whatever recommendations he gives, is what we will follow, whether it be surgery, or waiting till she's older. I truly feel throughout this past year and half that the Lord has led our family in every decision concerning Danielle's treatment, including finding Dr. Waner. I have said many times over to family and friends, that the Lord led me to Dr. Waner and we have to trust in the Lord and his decisions.
I will try and update this site after we find out what are next step in Danielle's treatment will be. Please keep her in your prayers! God Bless!
UPDATE: 2/27/01Danielle had her 1st major surgery. Dr. Waner removed the remaining hemangioma and massive excess skin protruding from her neck. The entire surgery went beautifully and I cannot...*cannot* say enough about Dr. Waner. Not only is he talented but he has a genuine care for his patients. The hospital was fantastic too, they seem to take ever step to insure the patients emotional needs are met as well as physically. We had several meetings with many different people before the surgery and before taking Danielle from my arms they gave her what they call "Silly Juice"...smile...aka Versed. It eased all seperation anxiety and that was a big relief to me. When they took her into surgery she was singing "happy, happy, happy" and waving buh byee *smile* Then they didnt put her IV in till she was under anesthesia, and that really REALLY eased my mind considering the last IV fiasco where Dani laid on the table for almost an hour screaming hysterically till they got it in. During surgery they kept us informed by calling the waiting room, letting us know almost every step and where they were with the procedure. Those phone calls eased my mind beyond belief! I was honestly surprised at how wonderful we were treated by Dr. Waner, his nurse, and the hospital. I can and have thanked all involved, but most importantly, I thank God above, for all he has done for our family.
Danielles next surgery will be considered when she's 2 1/2, then they should be scheduling surgery to remove the parotid hemangioma. We opted to wait till the tumor shrunk some more so minimize scarring and to possibly avoid major surgery again. So check back for my next update :-)
Looking over the last 1 1/2 yrs. of Danielle's life, I would like to say that the steroids, for Danielle, were awful, but we don't regret the decisions to put her on it. Who knows how large her hemangiomas could've grown & how much pressure they could have put on her heart. I shutter to think of it even now. But now..... were sure thankful that parts over with *smiles* We persevered over the prednisone!!! Yea!!! It's easy for me to say this, now that that parts all over with huh? *grin*
Also, Danielle has 3 different doctors at the moment...her pediatrician,Dr. Andrew Gellady, her ENT (ear, nose & throat) Dr., Dr. Carole and the *best* vascular anomalies specialist in her corner. Dr. Waner is rated the best specialist in the world, I repeat in the world, not just the United States. I feel this team approach has been working working well for us, although at times, it is a bit hectic getting it all coordinated, since each dr. is in a different city or state. Dr. Waner is the ultimate authority in all decisions. I would also like to stress....how very important it is to find a specialist well experienced in this field, with the knowledge and experience in the most current treatment options available. Danielle is fortunate to have had a wonderful team of really caring and compassionate doctors and I will be eternally grateful to them, please email me at ref="mailto:Danick220@earthlink.net">Danick220@earthlink.net and I will any questions you may have as soon as I can.
And lastly, I could not conclude this page without saying... I have become a true believer in the power of prayer. And that, when things are out of our realm of control, we have to surrender our worry and Trust in the Lord! Amen!
Danielle is now 2 years old, and it's been 4 months since the hemangioma on her
neck has been removed. She's doing wonderful!!!!!! She's got a
beautiful brand new neck, and the parotid hemangioma is involuting so well it
probably wouldn't even be noticible if the strawberry mark didn't draw your
attention to it. I never miss the opportunity to praise God when I talk
about how well Dani's doing, so PRAISE GOD ABOVE! It's amazing
how well she's doing and how far she, and "we" as her family have
come. *smiles* God bless you all
** UPDATE**: Well, Danielle is almost 3 yrs old, and we finally made it! Dani is now hemangioma free!!!!! YIPEEEEE! She had her parotid hemangioma removed Jan. 2002 and it's now been 3 months and it's healing beautifully. The surgery went off without a hitch and the scar is healing nicely. Back home they had to put her under general anesthesia again to remove the stitches, like last time, but it was a quick procedure and we were outta there by lunchtime. It's hard to believe no more worries, and dr. appts and insurance hassles. I think I'm still in shock that it's finally over, and now I just want to give back in anyway I can. If any parent has questions that I can help with thru my experiences **Please do not hesitate* to email me at Danick220@earthlink.net. Thank you Jesus for seeing our family thru this trial and let us never miss the chance to praise Your name when speaking of your healing touch in our little Danielle's life. Amen!
UPDATE 2009: Well,
Danielle is now 10 years old! I haven't updated the site in years because I couldn't remember the user name! Thank you Jesus for allowing me to find the paper I had it written on. (smile) But I have always recieved the emails and questions and concerns. My heart goes out to all of you who I've had the honor to talk and correspond with. My prayers are with you and your children!
For all the parents that wonder what will their children might look like later down the road, after the different types of treatment, I'm happy to report that Danielle is like any other 10 year old. She still has a very faint bit of red, not even 1/2" where her parotid hemangioma was but it's faint at best and even that fades more and more every year. Most don't even notice it because its near her jaw line. She still has a scar on her neck, but this is not from Dr. Waner surgical removal. His surgery healed without any lasting effects, no "ropelike" marks, you cannot even tell she had stitches from one ear to the other. We also used a product highly recommend by Dr. Waner called Mederma. The scar is from the emergency laser surgery Dr. Giannoni had to do in order to stop the excrutiating pain she was in at the time. I wish I had had more knowledge of lasers, perhaps I would have asked if a certain type of laser could have been used to prevent scarring, but I know without a doubt, I do not regret that decision. I'm grateful the laser worked and closed up & stopped the ulcertation and am so thankful to Dr.Giannoni that she was able to stop Danielle's constant pain.
Now, at 10, when people meet Danielle, if anyone even says anything, they usually think she was burned in that small area in the crease of her neck, because that's what it looks like. All the red has faded. I have to say I'm extremely proud of how Danielle handles the questions. She knows all about her hemangiomas and knows exactly how to explain it all in her own special way. Every once in awhile if the topic comes up I'll ask her if it bothers her and if she wants me to see if laser can be done to minimize the scar and she always says the same thing, "No mommy, It doesn't bother me." We laugh because I swear I tell that child everyday how much I love her and how beautiful she is. She will respond with "I know" and start giggling, not in the least bit arrogant way, almost as if, she knows without a doubt that, that is exactly how mommy feels about her, no question, no anxiety over her looks, even with the scar. When I think about it now, it brings me close to tears because I remember 9 1/2 years ago worrying about the psychological effects this would have on her later in her life, and if it would affect her self esteem. Well, it hasn't and I am so grateful of the decisions we made. They were so hard at the time but worth the outcome. If we had decided not to follow an aggressive plan of treatment I fear she would not have the confidence and self esteem she has today. Removing the hemangiomas to me, in my humble opinion, was the best decision we could have made for our daughter. Yes, I'm saying that in 20/20 hindsight, which is much easier then when we were back in those days struggling over what to do.
As parents, we do as much as we can for our children, and try to make the best decisions for them. I'm proud of the fact that Danielle is a beautiful little girl on the inside and out, she's outgoing and a chatterbox and she doesn't let questions upset her but handles them better than I do. Thankfully those questions get less and less as the years go by and the scar fades alittle more each year. I've uploaded recent pictures so you can see exactly what I mean. Thank you Jesus for all you have done for our family!
God bless you all and keep the emails coming if you need any insight from a parent that has "been there" or just need a shoulder to lean on. God bless! (((HUGS)))
Click here for photos ... Danielle's Hemangiomas Growing
Click here for photos ... Danielle's Hemangiomas Involuting (Shrinking)
Click here for photos ... Danielle's Hemangiomas Are All Gone!
Hemangiomas vs Vascular Malformations
Signs of Involution Treatment options
Danielle's Amazing Doctors & Supportive Organizations, chat, email forums
Other Hemangioma parent web pages
# of Vistors: This site has been up since Danielle was 1 year old. (2000)but I just got around to putting a counter on it 05/09
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