29 August 2011
From the moment I walked into St Jude, I was always trying to find families on my treatment plan so that I could make this journey as easy as I could for my son. I learned so much and each time I go back to Jude I seem to meet new families just entering their first few days there .... I try to pair them up with other families for support - like a buddy system. I do that because no doubt God brought families into our journey that are now my family and I needed their friendship and support just and as much as I was and am willing to give it to anyone walking down this path. Just know you are not alone..... I try to keep as many of the kids on the "Friends We Follow" Protocol SJYC07 for families to identify with other families, to show their stories and journeys.
I also know in my heart that part of this process and my calling from God is to always extend my knowledge and arms to hug a new family and try to give them all the support and advice that I possibly can!
So we will start at the beginning. When you arrive to St Jude, many families will call that "Hell Week", not sure of where that term came from, but somehow it has stuck with the newbies walking in those doors. You find yourself having to sedate your child for days in a row that feel uncomfortable as a parent. However these tests are extremely neccessary in order for your medical team to assess your child. For me, my son was 8 months old and he couldn't tell me anything so I had to rely on my God Given Motherly instincts that comes from the Lord. My husband hated him being sedated, but without these tests - we would have no baseline to start treatment. So you are handed a list of appointments for 3-5 day worth ... it seems overwhelming and it actually is.
You repeat your MRI - this is a must because their equipment at St Jude the best in the country. Their MRIs look like a new LCD TV in High Definition while your scan from your home hospital seems to look like an old black and white television set from the 60's.
They will do an LP (lumbar puncture) to rule out cancer cells in the CSF (cranial spinal fluid).
They will order an ABR (hearing test) remember they need perfect baselines to know if chemo has changed your childs hearing. For most families regardless of the tumor type or grade - most tumors are in the poterior fossa (back of the head) while only some are superatentorial (front of the head) Children with surgeries in the posterior fossa typically will have a tumor wrapped around, on or near the brain stem. With that being said, this area is where the cranial nerves are housed. I will list them for you and explain them in simple terms.
|Cranial Nerve:||Major Functions|
|I Olfactory (1)
|II Optic (2)
|III Oculomotor (3)
||Eyelid and eyeball movement|
|IV Trochlear (4)
||Innervates superior obliqueturns eye downward and laterally|
|V Trigeminal (5)||Chewing face & mouth touch & pain|
|VI Abducens(6)||Turns eye laterally|
|VII Facial (7)
||Controls most facial expressionssecretion of tears & saliva
|VIII Vestibulocochlear (8)
(auditory)hearing and equillibrium sensation
|IX Glossopharyngeal (9)
Taste and senses carotid blood pressure
|X Vagus (10)
||Senses aortic blood pressure, slows heart rate stimulates digestive organs,and taste|
|XI Spinal Accessory (11)
||controls trapezius & sternocleidomastoid and controls swallowing movements|
|XII Hypoglossal (12)
||controls tongue movements|
With our protocol and children being under the age of 3, most of these tests must be done to know if any of these vital nerves were damaged during surgery. Some of them may be blantly obvious ... for my son - he lost his swallow and his left vocal cord was paralyzed during surgery and after two weeks in the PICU he is sent home on and NG tube -WOW no ENT to check and just a follow up appointment for speech therpay scheduled and begin told this could be a long term thing ..... Thank God for my PCIU nurse - I dont even have to mention WHO. Each child faces their own challenges during this process and the deficits caused by the initial surgery varies with each child.
You will have a vision test and eye exam.
If your child seems to have a swallowing issue, I suggest asking your primary to order a meeting with an ENT specialist immediately. They will scope your child by placing a camera attached to a tiny tube in the nose and down the throat .... there all answers are placed on a screen and you can visually see what is or is not working. This test takes about 20 seconds and the child is awake. I won't lie it is dramatizing, but if your child can not swallow, wouldn't you rather know how to protect them than to not know if there is a problem? The answers out weighs the anxiety of this short test.
If I missed anything the first week .... I can always add it later .... so on to chemo
I was told by a nurse that I needed my son to be on and to request the attending to order saline alkaline swabs for my sons mouth ..... immediately placed on methotrexate that these sores could start in the mouth called mucositis and eventually lead to being in the entire digestive trackand evenutally in the anal area also. I was immediately swabbing my sons mouth with this fluid on a sponge and doing it not 3 times a day but 4 or 5 .... extra precaution I believed helped .... he never got mucositis... but maybe because everything was going through feeding tubes ... no one will ever know ... my true opinion both were factors.
Secondly there are these wipes for diapers during chemo called SHEILD Barrier cloths .... they do not tell you about them freely ... nor give them freely because if you tried to purchase one box at Walmart they cost $50.00 plus dollars. Not cheap for the hospital so they don't give them out easily. There wipes work if the chem urine pads and you can keep your childs bottom without being raw.
The first round of metho is the longest .... why because they know that your child just came from surgery ... clearing the first time in more important than any other time becuase they still have post surgery swelling and fluid collections. This is monitored closely.
I would highly suggest that you purchase a sound machine, this is the one we bought and our son still sleeps to it ... the reason for wanting it and needing it is that this sound machine inpatient will drown out the loud beeping sounds from the monitors and the nurses that aren't always so quiet and allowing doors to slam while your child is totally asleep.This is the link to the $24.99 sound machine..... it is from radio shack and if you are already settled in to target house on your way there is a radio shack that is next to a subway on your right hand side on Poplar Ave.
Another inpatient tip, know your meds schedule - go over it every single time with your nurse ..... if your child has swallowing issues or has a g-tube, mickey buttom or g/j tube - or even regardless of that --- they expect you to do oral meds when you go inpatient ..... I simply said no way .... If they could give him anything by IV - then that is what we did ..... it kept meds out of his tummy that might have made him sick during chemo and we just did not want to chance that. So everything was by IV .... we kept a solid schedule for meds too .... never once did we go off schedule .... depending on your childs age they can have Benedryl every 6 or 8 hours and Ativan every 6 or 8 hours, we swapped these two meds so that he was always getting something every 4 hours to keep him tired, when he got active he was more prone to getting sick and so we tried to keep him on shedule while chemo was on .... Zofran was always every 8 hours and never missed a beat with that, we never tested it or challenged it. We ran into our Nutritionist during round 2 and we said he's doing well I think we will stop giving him benedryl and zofran at home while hes not on chemo - she bluntly said, I have seen children go on and off like that and the ones that stay steady seem to not get so sick on chemo ... she's seen it and we trusted her and our son rarely was sick. Granted each child reacts differently on these drugs ut we seem toget though without too many issues.
As for feeds during chemo ..... we seemed to find that during methotrexate we would drop our sons feeds to 15ml steady the whole duration and once done bump it up in 5 ml every hour till we reached 35 ml an hour ..... during day 8 and 9 we would honestly stop his feeds one hour before chemo and tried to make sure it was given while he slept .... this worked best for him and a few hours later we would adapt the 5ml march to get to 35 or 40 ml an hour ... it was just enough food to get all his calories daily - but not enough to make him full and sick on chemo. Another thing you learn is that the digestive system slwos down while on chemo - even with the terrible diapers - everything moves slower so dont push them to eat ... they are getting more than enough fluids by IV and its not worth making them vomit. Feeds are trail and error, we just never wanted to rock the boat once we realized anything over 35 ml made him sick. There is a product called duocal and it is a buttery sweet thickener for added calories that we used the whole time for formula or pediasure. We kept Nicholas of feeds 22 hours a day to keep him from dropping weight .... he started gaining at the end ... never really ost so we are grateful for our g-tube it was a blessing in diguise throughout treatment.
For children without a g-tube that are getting very ill from chemo .... push for IV meds .... and if they are really dropping weight there is an IV supplement called TPN that works great for the ones that just don't want to eat. This is a temporary fix and they do not like keeping kids on this long - but it works great for the ones getting frail.
Again I can not stress to you enough how important it is for you to makes sure you are on top of the nurses and that you know your childs med schedule. My husband was amazing with organizing this end of it always, at night its a must to get up and check how they are handling your child. You get no sleep but its important to know everything. for lines and feed tubes to keep them secure my husband would get a product you can ask for called x span tubular dressing - you cut a "V" out at the top and slits for the arms and its like a mini vest our the line dressing and g-tube .... the lines run down to one leg .... then he would place a onesie over the netting dressing and pull the dressing over the onesie buttons and weave the lines through the buttons completely securing the lines from being tugged. Even the nurses said thats great..... it kept everthing safe.
Upon your first discharge...... 2 great things I didn't know until almost round 2 .... 1st..... if you want out faster the day before your admission .... in e clinic is a white folder on the counter requesting all you may need for supplies and meds ... if you do this PRIOR to admission and know what you need prior to leaving and place that order, it will be waiting in pharmacy and in supplies before you go... it will not hold up discharge because you will not need pharmacy to order anything for you...if you must order anything you are STUCK .... its a few hours before your going anywhere. The 2nd is how committed you are as a parent? - they (the medical team and nurses) watch you like you watch them ... if you are on game ... they will give you meds by IV to give your child .... if not ... they will make you sweat it out inpatient ....
Day 8 and 9 ..... these are the tough days ... this is when you may expect a child to get really sick .... do be alarmed - this is just part of this process. A nurse will visit you (probably Kelly Tickle) and ask you, do you know what ANC is ... it is Absolute Neutropil Count for blood .... She may ask what does platelets do ...they prevent bleeding. Red Blood otherwise known as Hemoglobin carries oxygen, White Blood cells fight infection. You will memorize this by round 2 and you will be comparing your counts with othere parents. This is your new **coffee talk** language.
You will be given a choice on the following day, considered Day 10 as to whether or not will will want to do IV or shots of a rescue drug called GCSF, we were told by our primary Dr. Wright that there was a study between the two ways of administering this drug and which brought counts up faster, the shots brought counts up roughly 2 days faster. For us that meant my son would feel better faster, we chose the shots. What we did not know about until after we were done was a topical cream called LMX4 that is a numbing cream. If placed a baby finger tip glob of it and place a piece of tagederm over the area 30-45 minutes to the area getting the shot, it numbs the skin and they will not feel the needle. I was pretty bummed no one mentioned this to us and only learned that when we switched to the port versus the double lumen - hickman line that we were told was part of the protocol. During our stay at St Jude this changed because so many kids were getting line infections and the plastic would harvest the bacteria on it and many had to pull the line and have it replaced. They finally switched everyone to ports - WOW if I had only known how much easier the port would be all the endless days of holding my son down for a 20 minute dressing change was not gone and not needed.
If you have the choice to get the port -----GET IT! You have no idea how hard line changes are and the bacteria that can immediately put them at risk when count drop.
Let's talk about counts dropping ... somewhere around day 15 the count drop to zero, yup a great big 0 and they expect your child to - that means that everything good and bad is killed and that the chemo is doing what it is intended to do. When my son got near 500 ANC I would cancel all his OT,SP, PT etc ... I would rather sit in my Target room than come walk around the hospital where who knows who is walking around coughing, touching and breathing next to my child. I cancelled everything until his ANC was 200 on its way back up. There was no point to test whether or not he would get infected. I can happily say - my son never got one infection the entire time at St Jude. However we did end up inpatient 3 out of 4 round when his counts dropped to 0 and he would spike fevers. They say 99.4 and above is an automatic admission. My suggestion to you is - if it's just 99.5 or 99.6 wait at least an hour and re-take it because if its a fluke - you are automatically staying for 2 days no matter what ..... The first round we could have avoided that but we were too nervous and ran as soon as his temp hit exactly 99.4 - you know your child and all I can say is, its hard not to over react - but try to avoid going inpatient for nothing! Because when you do ---- those days are longer than any chemo fighting days you will spend there. Those emotionally drained me more than the days where we were doing something while there.
Not all families go to consildation phase being proton. if you are in the low risk category or the high risk, this information will not apply to you, this is only for the intermediate risk.
The week after your 4th round of chemo you will have multiple meetings with radiology to simulate for proton. I never understood why they simulated at St Jude and then again when you arrive in Jacksonville, U of F Proton Center. Now after the fact I can tell you that they simulated you at St Jude and Merchant gives his opinion on the mapping. His pan is not the plan. I felt misled with that detail once I arrived there and had a few issues.
Your child will have a baseline endocrine test done prior to radiation to follow up to see if radiation will effect the pitutiary and thalamus for growth hormones. This test takes 3-4 hours and the kids get pretty sick from it -ZOFRAN!!!
You will be sent to LeBonheur for a quick in and out procedure where they will place typically 3-4 titainum screws in the skull for mapping and lining your child up daily. Children with large shunts if they have one may not need this surgery because they may had enough hardware to line the child up safely into the same position daily for radiation.
Of course you will have another ABR for a baseline too from not only chemo, but for radiation.
We opted to not stay at Ronald McDonald Housing that was provided for free if we chose to stay there. Since my husband and older son had to go back for school back home, my husband rented a nice condo for us during our stay on the St Johns River at the Strand. Its funished and beautiful. It took 7 minutes in morning traffic to get to the Proton Center.
If you choose to stay at Ronald McDonald House, its location is great because it is across from Neumors and this is where you will have clinic appointments every other week for labs and the doctor to assess your little one.
You will meet with the Proton facility and do your simulation. Then you will meet with a Neurosurgeon just in case anything takes you off course. These are really meet and greet meetings for a team to be esembled in Jacksonville.
Every Monday your child's port will be accessed and labs will be done. Typically you get results the next day. The port will remain accessed until Friday where they will deaccess them. For us we used LMX-4 cream at least an hour long with tegaderm to cover the port to numb it. They now have the J-tip it is a spray that does it in seconds and older children like it and it stops the anxiety of the cream sitting on their chest.
You meet your RN (Annie was ours) for the duration there. You will meet your Radiologist, prayerfully I hope you have Dr. Danny - I personally wouldn't want anyone else to be involved with my child, he listens to Merchant and they are in close contact and since Merchants plan isn't "the plan" I would pray you have Dr. Danny Indelicato for more reasons than I would disclose. :)
It will take 9-10 business days for your your plan to be ready. You will begin and it will last for 30 sessions on our protocol.
Sedation, espeically with a child with swallowing issues I found it to be essential to ask them to push the propfol slowly. They had different people daily so it was never the same team of doctors. I would always ask please push slow - do not draw back and push and pull etc. just a slow push to let him swallow before going out. For me this is the hardest part to see my child sedated and going limp in my arms with a kiss on his forehead. It became accumulative and got harder the more I had to do it. I counted down the treatments.
Some kids got sick during radiation, but I kept my same schedule through radiation they gave him 1 mg of zofran before sedation everyday. I missed his 8 hour dose once and it was a mess, he got sick. I never went off schedule again and he remained without being sick. There is a 24 hour IV Zonfran you can request that they would not need an oral meds but we never requested it. It is an option though.
Skin care, I watched children a few weeks ahead of me with burns applying a cream called Biafine. I requested it during week 2# and asked my Dr. where his radiation fields entered so I could apply the cream. They suggested to apply 2 times daily. I did it 3 times and thick coatings that I allowed to absorb on their own. my son lost his hair on treatment 17 and when he did it was like I wiped it off. It was nothing like chemo, it was so smooth and GONE. My son's hair grew back fully be 2 months, while the children that waited to use this cream still have not had their hair grow back fully. I suggest it as a prevenative vs waiting for it to be repairing the skin - this cream helps restore collagen and it repairs the skin. My son never had a burn once.
Night terrors..... this one bothers me because I asked other parents about it - my son would wake up screaming for 30 -45 minutes straight arching his back and I could do nothing to help him. They lasted threw oral chemo and were worse of erolotnib. depending on your childs tumor type, this drug is used for ependymomas. They happened for about a month after finishing treatment and stopped completely. They were scary and alarming especially with scans coming up - if your child has this happen - PLEASE report it to your doctor at Jude. They never heard of it until I brought it up and asked other families to do so also so it was recorded.
I know I will have more to write about ... I am not spell checking this but this is a start .... I just wanted to give good advice on how we got through these most stressful days.