my 5 year old went for ct yesterday and was called 3 hrs later that said must have a mri today

[lexismom2005]

My 5 year old daughter suffers from headaches with vomiting . She has had these for about a year that has gotten worse . Her doctor decided to send us to the hospital for a ct scan within hours before the drs office got the results the hospital called them and said she needs to come in today for an mri with and without contrast ... does this mean they found something ? She has had prior health issues when she was 9 mths old she developed an infection that appeared to be over night her lymph nodes became swollen in her neck so badly that it required surgery and a 13 day hospital stay and a month of home health care ... her fevers was so bad and she had one for 8 days straight then one day became better all of a sudden .... she seems normal and healthy now just has trouble with head pains .... is this normal to be called back for more tests so quickly ? I just need some one to be honest with me

[rumpled]

Thanks for letting us know the site! We will be sending kind thoughts and prayers. I have had three family members battle brain tumors and it is not an easy thing.

It does seem overwhelming and hard to understand, but after a while it does start to sink in. In the beginning I used to just save things in a document that I thought were applicable, and read them over and over, and it was like studying, after a while, some of the stuff made sense. Then you learn from others as well.

[lexismom2005]

Thank you. They have told us they don't know much about hers but they do believe it is low grade which we are so thankful for. I did a lot of research on this and it is all very confusing. The oncologist is good with talking to us but it is still foreign to us. They try explaining the different types of Gliomas and what she has and I leave feeling more confused than I did before I go in but the doctors gave us good advice and told me to start bringing a note pad in and write it all down and look it up when I get home . We have been very fortunate to have a small community and everyone is willing to help us and I work at Walmart and have such a great support group there as well. I just wish we knew people who was familiar with this disease. We have bought our brain cancer support bracelets and we wear them as a family and even friends have started buying them and wearing them also. We worry a lot but seem to find comfort in the support we get in person and online . Lexi has a caring bridge page if you would like to check it out ..... www.caringbridge.org/visit/lexifogg

[rumpled]

Thanks for checking in. I do hope that she improves with the chemo. It is a tough treatment and she will have to be careful with her diet and immune system.  

"Glioma" refers to the type of tumor that grows from a certain cell - glial cells - and it is cancerous. They have different grades which would be how aggressive the cancer is - so the lower the grade, the slower the growth rate, the higher the grade, the faster the growth. There there are stages - that I think takes into account spread and grade. It is pretty complex.

Take care of yourself too... a long term issue like this is very wearing so make sure that you and the rest of the family gets some support that they need - so counsel, friends (that do not have colds, etc.) to help bring healthy food, help cleaning the house and all can help give you a break.

[lexismom2005]

Thanks everyone for your kind thoughts and words ... Lexi is doing so good now ... We still see her oncologist and he is the best !!!! they determined it was a glioma but not one like anyone has ever seen ... they said normally it is one kind of glioma but hers has a little of all appearance in cells and minerals so it doesn't have all characteristics of one particular glioma so they are just calling it a glioma but said it was cancer. The tumor is/was studied at John Hopkins hospital so it has taken us a while to get answers but the oncologist told us the other day chemo will be the plan. It has been a long and strange journey but I believe things are getting better. We have been told for the next 5 years we will have a ton of MRI's done every 3 months then from 5-10 years we will do them every 6 months because if it starts growing we need to do more to fight it but if she starts getting sick the way she was before then of course we do a scan much sooner than that but they are trying to do the least possible because she still has to have so many each year due to her condition and each time it sends so much radiation into her little body and she is put to sleep and they say the risks are high for something to go wrong the more times she is put to sleep and has these done but they are necessary. Thank you everyone for keeping a check on us sorry I rarely get on but we are always traveling and seeing doctors.

[horselip]

Hey-

How are things now?

Have you found out any more info?

In your last post you wrote that the docs were not sure if the adenoma was in the blastoma family.

Have the docs able to come up with a treatment plan?

How is Lexi doing? Is she still having those awful headaches?

x an o
Horselip

[steph9803]

Oh gosh...I'm so sorry...as said above the recovery will be long and slow. I'm glad she's getting treated at such a great hospital! It makes such a difference. I will be keeping you both in my thoughts and prayers and saying extra prayers that her recovery goes smooth. XO

[rumpled]

I am so sorry to hear this news...  I do hope you have a good support system around you to help you during this trying time.

I agree with TBH - they do remove what they can - and hopefully they can destroy the remainder using other means.

Sending powerful healing vibes to you and your daughter! Do keep us posted as you can.

[tiredbuthappy]

oh my... my heart breaks for you hearing this journey. I hope that she is resting comfortably. Recovery from a craniotomy is long, and expect her to be tired for a very long time. Poor baby. It is good that they removed most of it- it can be dangerous to remove all sometimes and it sounds like they exercised proper caution. Sometimes, microscopic cells are left that they don't know about so a treatment plan may not be formed right away. At least in knowing there is a little left, and having the benefit of a biopsy to know what exactly they are dealing with, they will come up with an immediate plan and hopefully take care of this thing once and for all.

I have heard that about chemo as well. I wonder if any of the other treatments would be possible for her- gamma knife, cyber knife, proton beam, fractionated radiation, etc...

Thank you for taking the time to update... I was thinking of you. Please be sure to take care of yourself too.

[lexismom2005]

It's been a while since I have last posted but we ended up spending another day in the ICU and then had surgery on November 8th and spent until the 11th in PCICU. We was referred to an oncologist and now are working a treatment plan with him because her tumor is cancer and needs further treatment. We are going next week for more answers and to find out if chemo is something that will work for it bec he says some brain cancers do not respond to chemo . He says he believes hers is in the blastoma family but it will be when the full pathology report comes in until we know for sure and then know how to treat it next. They removed almost all of it and removal of all of it was the plan but the MRI the next day shows a small spot was left. She had a craniotomy done and the dr thought he got it all but he got all he could get to and there is still a spot left behind.

[MyDaughtersAdvocate]

Be strong for your daughter. My heart goes out to your family.

[tiredbuthappy]

good luck today. keep us updated.

[rumpled]

I do hope that you get some good news - and some ideas for treatment.

[lexismom2005]

She is only getting worse with the head pains and she thinks she sees smoke and other things that are not there. We are counting down til we can see Dr. Pearson Wednesday so only 2 more days . We video taped a spell yesterday where she was hurting so bad in her head begging for the pain to stop and after that she become so nauseous. I will post again after we find more out on Wednesday.

[tiredbuthappy]

keep us updated! How is she doing on the lower doses of medication? Have you noticed a difference?

[lexismom2005]

Thank you we appreciate all of the prayers everyone has sent out to her . She will see Dr. Pearson on October 5th and hopefully we will know what will happen next. She went to the neurologist in Nashville on Sept. 13th but they just adjusted her medication and lowered them some to see if she sleeps less with less medication. She is now homebound and can not attend school but we are hoping things get better after the 5th of October.

[steph9803]

* I meant NIH OR Methodist

[steph9803]

I'm still keeping your daughter in my prayers! Are you seeing a neuro at Vandy? If so I would recommend Dr. Pinna Garza...he's brilliant.

I have a very rare tumor in a rare place and have been told over and over and over again that the doctors and hospitals I've talked to have never dealt with anything like it..I was fortunate enough to have everything work out to where I have a Skull Base NS at UT Knoxville who is qualified to help me with this tumor. If you find out that it's a Skull Base PLEASE contact NIH of Methodist in Memphis. Not sure where you live, but I'm assuming Memphis wouldn't be too far if you're getting treatment in Nashville.

[rumpled]

I would be leery of the whole steroid thing myself - steroids really are not cures but masks. they can reduce inflammation so unless the tumor is something that is inflammation that requires a short course, well - it is a pretty difficult long term med. I had Cushing's which is too much cortisol aka steroids - it really messes up a body.

You can also contact NIH - www.clinicaltrials.gov - that is also free treatment - see what is going on there.

There is a learning curve with all this.

[lexismom2005]

Thank you that sounds like a great idea !

[tiredbuthappy]

Found it.
http://virtualtrials.com/btcenters.cfm

In your case, I would definitely contact some of these, especially if it's free. You can search some of the names to see if they specialize in pediatrics.

[tiredbuthappy]

There are also places you can send her MRI's to for free consultations. I'll try to find that link for you. If this is something that they consider rare, it is likely that some of the tops surgeons in the country may be able to give more insight and may even be eager to take on her case. I'll look for the link now.

[lexismom2005]

Thank you . I will get the records on Monday and hold on to them tight ! My husband and I are wanting answers now but they are saying we will not know more til next month when we do another MRI to see if it has grown because it is in a very risky spot and that is all we are being told but if this is something that can harm her before they do anything about it we want to know . I had cancerous cells when I was 16 and my surgeon told me if they had not been removed he suspected within a year I would have had cancer and it could have spread so I do not want this to happen if this could be it. We love the hospital we was sent to but to be told we have not seen anything quit like this worries us and we do not want to sit on top of it until they realize it is a more serious thing . Don't get me wrong they have us coming almost weekly and they are treating her with steroids and hoping that shrinks it before they go in and that may be the best way to handle it but we worry so much . I don't expect them to go straight in and take it out but I just wonder if something could be done like something to drain it because they told us there was pressure building up that is the reason her head was hurting so much but the steroids have helped but what happens when she stops taking the steroids ? I may be over reacting but we are just very concerned and I am sure it does take time to find out what these things are and if they are dangerous or not and come up with a plan to fix it but as parents its hard to understand . I am just worried also that we spent several days in the critical care unit and then was released with not many more answers than when we first went in but I appreciate everyone helping us on this site now I feel more prepared on what to ask when we see the doctor on Monday.

[lexismom2005]

Thank you so much and I am sorry to hear about what all you have gone through . Yes it is in mm. I will for sure ask to see another surgeon because we did find that 1 of the surgeons that we saw in our stay there wanted to do the surgery for a biopsy then because she said it was very concerning since they do not know exactly what it is . I will speak with the doctors on Monday and ask for her files, I just do not know what to do but I want to do what is best for my child ... I was just so very lost while down there. The doctor we see on Monday should have them because the surgeons office said they would send them to the doctor if not I will call the surgeons office and get them . We see them again next week too but I believe I will also schedule an appointment with another surgeon for a consultation as well now that I have heard your story .

[rumpled]

Yes, I agree, location is key. That is a slightly smaller than a walnut sized tumor? so you have to know where it is and CNS does not tell you much...

The meds have side effects - so keep an eye on that. Do keep a copy of all the records. It is a bit weird to me that they are not giving you more specific information. Get it - keep on top of it and have the social workers help you out as well.